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What’s Up WID: Disability Justice Transcripts

Ashley Inkumsah:

Hello everyone, and welcome back to What’s Up WID, the World Institute on Disability podcast where we discuss what’s up in the disability community across the globe. If you’re new here, I’m your host Ashley Inkumsah, and on today’s episode I will be sharing with you my very, very fruitful conversation with Dustin Gibson about the disability justice framework. Now, Dustin’s work centers around eradicating institutionalization and incarceration. He is the Access, Disability, and Language Justice Coordinator over at PeoplesHub. He is also a Peer Support Trainer at disABILITY LINK. He’s a founding member of the Harriet Tubman Collective, and he also works with a number of other organizations that focus on abolishing the carceral system and the oppression of people with disabilities.

Ashley Inkumsah:

Dustin and I, we really, really had a fantastic and a raw conversation about the disability justice framework and the origins of ableism and its interconnectedness with other systems of oppression. I really, and truly hope that you enjoy our conversation. Thank you so much, Justin, for joining me for today’s episode of What’s Up WID. If you could please explain to us how the disability rights movement changed the lives of people with disabilities and where it fell short.

Dustin Gibson:

Judith Butler talks about the idea of being able to assemble in public and deliberate, and debate, and gather being central to participating in a democracy. I think what disability rights movements… I think of it in factions as well. I don’t think that it was just this one large monolithic push for disability rights, but more so a bunch of smaller efforts that combined to create this critical mass, I guess, of people that are pushing in different areas for the rights. I view that in the lineage of the black radical tradition too, knowing that some of the history behind how students organized and other disabled people organized in California to bring about even access to education or the 504. Knowing that they got those templates and that strategy from the US black South and the traditions of Ella Baker and Fannie Lou Hamer.

Dustin Gibson:

I view it as a part of that. It’s also a fight for autonomy and agency in the same way that people like Fannie Lou Hamer were fighting for. Thinking about being able to choose what you do with your own body, especially as a black poor woman at that time and to-date too. I think about the disability rights movement as something that has provided, one, an articulation of what it actually means to be disabled in a society that is inaccessible and ableist. Then two, it’s given a platform and a possibility of being able to deliberate in public and being a part of the public, which is also central to democracy. When we talk about we the public, I don’t think that disabled people are necessarily included in that inherently. What the disability rights movement has done, in my perspective, is chip away at that quite literally of thinking about the smashing of curbs and whatnot.

Ashley Inkumsah:

Where would you say that it fell short?

Dustin Gibson:

As you said that I’m thinking about Kwame Ture’s quote. I’m not going to put it into a lot of context, so I don’t want this to be stripped out of context. I would just ask people to maybe look it up. But when he was talking about non-violence as a strategy and saying that Dr. King made one fallacious assumption, and that was that the United States had a conscience and they don’t. I think that the assumption of the disability rights movement, along with other civil rights movements really, is that the settler colonial state of the US, the project of the US, the imperialist project that it is, could actually grant people these types of rights and would want to. It lives within this construct that is inherently ableist, racist, misogynistic, patriarchal, imperialist, all of those things and more. It lives inside of that project.

Dustin Gibson:

I think the failure of it is to not be able to capture and be in solidarity with other movements. That’s not to say that that didn’t happen. It definitely happened, it still happens now. But it didn’t do in a wholesale way that… and this is not just an indictment of the disability rights movement. This is all civil rights movements in my perspective too, that they haven’t forged enough solidarity cross-issue, cross-group, cross-people in order to actually bring about what I would believe is a revolution to actually see the liberation of people and see power in a way that we need it in order to… I mean, literally in this point thinking about the environment in order to survive, us and the planet.

Ashley Inkumsah:

Can you talk about how the disability justice movement, how it addresses that and how it seeks to address the shortcomings of the disability rights movement?

Dustin Gibson:

Yeah. I do want to caution that. I don’t necessarily think that we have a disability justice movement right now. I say that as somebody that is extremely concerned with prisons, jails, nursing facilities, asylum, state hospitals, all forms of institutions, group homes. Places where people’s freedom has been taken away from them. Places where they’re under 24/7 surveillance. Places where people are monitored even outside of these carceral apparatuses. Just thinking about how there is not just enough attention paid to that. Even in a time where, we’re still in the middle of a pandemic where the majority of the people that have died from COVID have been people that are residents or are being held captive in nursing facilities and other types of institutions like prisons. That’s not even counting the amount of people that are connected to them in somehow that have contracted it because of that.

Dustin Gibson:

I think about how little attention is paid to those people who are mostly disabled, and knowing that a movement can’t actually move without those people. I think about the prison abolitionist movement, and one of the things that I appreciate about it is that it works from inside of prisons. People inside of prisons are the ones organizing, are the ones articulating the vision, are the ones telling us what is happening in prisons, telling us the impact on it. There’s this communication that exists in a way that it doesn’t with some of the other forms of institutions. I think that’s something that we really should be concerned about and reflect upon as people that are interested in disability justice and building movement. Now, I will say that we are building movement. There is an ecosystem that is forming. There’s a lot of disabled artists that are articulating our experiences in creative ways. They’re receiving platforms now or building platforms that I don’t think we’ve seen with artists that would socially and politically identify as disabled.

Dustin Gibson:

I guess another point would be tying our identities or understanding our identities as political, as an important aspect of disability justice. Whereas though I think, for a lot of different reasons, the disability rights movements, the traditional ones, weren’t at a place where they’re able to understand themselves as people that are politicized regardless of how you identify. Disability justice is attempting to… well, I think it is a opportunity to be able to reach people that will never identify as disabled for a lot of reasons. There’s a lot of reasons in which it’s dangerous to identify as disabled. You could be tracked into a substandard education system. You can be tracked into the prison system. Even right now, one of the pushes is to figure out how many disabled people are incarcerated. I would caution against that too because there’s been no indication to say that if they find out people are disabled, that they’re to do anything to actually benefit or improve their lives. It’s quite the contrary.

Dustin Gibson:

Those are some of the things that I think disability justice asks us. I don’t have answers for it or solutions, but I think that the questions that animate the work of disability justice are really distinct from those that disability rights asks us. Disability rights asks us who’s public, which is very important, critical. It asks us, are these institutions accessible? Is there accommodations being provided? I think all of that is important, but then I also think that work of, how do we fight for the rights and secure the rights of people that don’t know that they’re disabled, or reject the label of disable? Or how do we fight against all of the disabling systems and violences that take place without marginalizing the people that will be disabled regardless of those systems or those violences? Those are questions that, again, I don’t have answers to, but I think that animates the work.

Dustin Gibson:

I would say the last thing that I see as a separation is the focus on the individual through the law. The ADA, or the Americans with Disabilities Act taking its definition from the 504 provisions of the Rehab Act of ’73 is carving out individual accommodations for people. Yes, there’s this way in which we build an accessible world that we’re supposed to. We know that we don’t actually do that, so it’s failed in that regard. There’s no way to actually enforce these things. How the US, as this settler colonial project, enforces things is through criminalization. We know that that’s not going to actually get us anywhere. That individual approach to accommodations is something that disability justice pushes back against and understanding that what we’re doing has to be collective in a way that, yeah, those individual accommodations they’re set up for specific people rather than how we would all interact together.

Ashley Inkumsah:

Yeah. Yeah, you mentioned that we’re not yet in a disability justice movement, but we’re building upon one. I think of last summer how Black Lives Matter, that was a movement, so to speak. It was supposed to be, but I juxtapose where we were, again, last summer against where we are now and how it’s not really so much on the vanguard. People are not nearly as energized as they were at that time. How do we build upon to create a movement rather than just a moment? Can that even be done in 2021 where, I don’t know, people’s attention spans are so whatever, and social media incentivizes people to say things on social media and they feel like they’re making a change but they’re not really doing much of anything. How do we build upon and create a movement rather than a moment?

Dustin Gibson:

Yeah. I mean, I think that’s a good question and I’m not sure if I’m the person that’s most equipped to answer that. But I do think that, well, I know for sure that those moments, the moments of polarization, which I think we need more polarization. I think we need to be clear about we’re fighting against fascists. We’re fighting against people that quite frankly would kill us if they had the opportunity to, and do in very methodical ways on a daily basis. I think we need to be clear about that and choose sides and actually root down and build what we need. A part of that is understanding that those moments of protests, those moments of uprisings are opportunities for organizers to create opportunities for those people to become a part of the movement.

Dustin Gibson:

Although it’s not as visible as it was last year, even taking from the protest after George Floyd was murdered. People rooted down in their local communities and got together and formed networks to be able to build strategy around what it actually means to defund the police. I mean, to the tune of like almost a billion dollars in a year, there’s been disinvestment from police. Now, there’s been counterattacks to that in federal funding and all of these other things that have happened. But what I’m taking from that is, after those moments of protest, what happens is people go into rooms. People hold political education workshops, sometimes four people show up, sometimes six people show up. But those people show up continuously and hold that space and think of new and innovative ways, and sometimes old ways, to build what we actually want to see.

Dustin Gibson:

I think that’s what builds movement, along with art. I think art is such a critical aspect of how we articulate our experience and document what is happening right now. I see more disabled artists becoming engaged in a political type of craft, I guess. Even the craft itself of disabled artistry is something that, Simi Linton, one of my mentors who referred to was like, “Disability is an aesthetic.” Thinking about that process of crafting and creating while being disabled is also teaching us what access is and how to engage in access. I think that work of, how do we perform access? How do we perform access is allowing us to interact with each other and the planet in a different way, which I think is the vehicle to abolition, is the vehicle that we’ll use to get to wherever we want to go. Because the how is just as important as the what.

Ashley Inkumsah:

How would you say that the systems of racism, ableism, sexism, homophobia, transphobia, et cetera, how do they interact and reinforce one another?

Dustin Gibson:

I would say that they’re literally dependent upon one another. One can’t exist without the other. They’re weaponized and used against us that way. There’s a bunch of things we can cite. We can cite that queerness was in the DSM up until the ’60s. We can cite how people… right now in California there’s a bill to provide reparations for people that were forcibly sterilized in institutions, prisons. It was like over 20,000 people that they had documented and about 350 are living now. One, I should mention that giving people $25,000 for that is absurd and insulting. But it’s an acknowledgement that something happened. But thinking about the people that were forcibly sterilized and still are in some cases, the women in North Carolina, the poor women, the black women in North Carolina, in Sunflower County, Mississippi. We were talking about Fannie Lou Hamer earlier, and also people like, disabled people that go into institutions where those same…

Dustin Gibson:

The justifications for attempting to get rid of populations essentially, eugenics, the justification for that has always been these type of marginalized identities. That’s one convergence of what that looks like. I think of prisons as a place where we can see the convergence of this. You can see that the majority of women, now I’m speaking specifically for Pennsylvania, have experienced some form of sexual assault either prior to or during their incarceration. You can also see higher rates, disproportionate rates of psychiatric disabilities within the population of people in prison. It’s a place where you can see the outcomes of what is happening in the free world, I guess, and who is actually being targeted by it. What we often find is people are not… I think Audre Lorde said we’re not singled layered, so you’ll find that people have multiple identities. Those are the ones that are targeted the most. Those are the people that are, I don’t want to say… for lack of a better phrase, I’ll say most depressed.

Ashley Inkumsah:

I think a lot of people think of the civil rights movement or right now Black Lives Matter movement, women’s rights movement. People think of them as being separate movements, but they don’t realize how it’s all connected to one another. Liberation for one is liberation for all, so definitely [crosstalk]-

Dustin Gibson:

Yeah. I even think about that in the context of slavery, and I think about Sojourner Truth’s freedom journey, and how she infamously walks away, doesn’t run away, from a plantation. But after she was allegedly supposed to get her freedom papers, the thing that kept her on the plantation was a hand injury or a wrist injury, which is essentially a disability. The justification was, you want to be able to be self-sustainable. So thinking about how those, her identities, could be leveraged at different points to do the same thing to benefit the institution of slavery and take away your freedom. That’s, I think, some of the more important things rather than just thinking about… all of it’s important, so yes, thinking about how the systems interplay with each other and how they feed off of one another, but also how they can be leveraged against and justified at any point in time.

Ashley Inkumsah:

Yup. I think of the phrenology that was used to justify slavery, that they said that the slaves’ brains, the composition of the Africans their brains, that’s what made them inferior to whites therefore they deserved to be slaves. Those of them who wanted to run away, they were considered to be mentally unstable as well. So all of it is connected and it has such historical… if you go back you see everything is connected. All of this [crosstalk]-

Dustin Gibson:

Yeah, those census records that tell us the majority of free black people in 1860 or 1840, or people that are, essentially in their words, idiotic and asinine. People that are still in enslavement, or slaves, or people that are of sound body and mind. That pathologizing of blackness and disability happening at the same time is something that still comes out today. What I would refer to or Talila Lewis would refer to is the manufacturing of disability and things like excited delirium or oppositional defiance disorder. Where it is depending upon a character of how black people behave in order to create and inform this idea of what a disability is. Then from there you can purportedly treat people, which is usually punishment.

Ashley Inkumsah:

I think a perfect modern day example is how you see black women, how we die at such a disproportionately higher rate at childbirth and how black women are not believed when they say that they’re in pain when they’re pregnant, and then it results in that happening. It’s that intersectionality of being black, being a woman, and having a disability, and not being believed and just being made to be gaslit, and then ultimately it’s killing us.

Ashley Inkumsah:

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Ashley Inkumsah:

Why do you think that recognizing this intersectionality of multiply marginalized people with disabilities, why is that so important?

Dustin Gibson:

Yeah, I think that’s important because as we understand disability, I’m speaking mostly for myself. How I understand disability is really through a lens of whiteness and it is constructed by and for white people. Not just white, just wealthy, white people as well. I think it’s important because disability lives in every group we can think of in the world. I also believe that it lives within us in our bodies and minds differently. I don’t think a diagnosis of schizophrenia or cerebral palsy is the exact same thing in people. Some of the things that separate it or make it unique, I guess, and how it lives within us, is our social determinants. It is socioeconomic status. I think that there’s this cog wheel. When we do workshops sometimes we have a image of a cog wheel that says trauma and violence is a cause and consequence of disability, and poverty is a cause and a consequence of violence, and violence is a cause and consequences of trauma.

Dustin Gibson:

All of those things creating and shaping what our actual experiences are. If we respond to disability, that’s what we do with the law or with disability rights, we respond to what this disability is and how you can accommodate that stagnant thing. With a disability justice perspective that is relying upon or is rooted in one of the principles being intersectionality, is to understand that all of those other things shape how we live and shape also how we respond to it. Rather than it being this individual thing, it has to be more wholesale than that. Disability doesn’t live in a vacuum. I think that intersectionality is a lens to be able to view how our experiences are shaped by, not just our other identities, but how our identities are literally interplaying with the systems of domination and oppression and power.

Dustin Gibson:

Power being the key in that definition from Kim Crenshaw about intersectionality. As an organizer, as somebody concerned with attempting to find new ways of being I guess, identifying that power is important for us to seed it, and build it, and leverage it, and do all of the things that we need to do to change that experience if that experience is one that is being harmed or having violence inflicted upon us.

Ashley Inkumsah:

Why is it so important that we center the experiences of those who are multiply marginalized instead of centering scholars? Why is it important that we center their experiences when we’re talking about the disability justice framework?

Dustin Gibson:

I think that the idea of centering specific people has been somewhat convoluted, and I do think it’s really complex. I think that we should… yeah, I don’t know. I think we should be cautious about what that actually means to center people. I think about times of, when somebody is murdered by the police and we say we need to center the families. Oftentimes what that means is the families are now in a position where they have to give policy recommendation. Where they have to say how they’re going to… how we should, as a collective, stop this from happening to somebody else. I think that’s an impossible situation to be put in. One, I think it’s very unfair. I don’t think it’s actually supportive. I mean, Mariame Kaba. I would recommend Mariame Kaba’s last book, We Do This ‘Til We Free Us. Where her and Andrew Richie has a article where they discuss some recommendations of what support in abolitionist politics looks like in moments like that.

Dustin Gibson:

I say all of that to say that this is why movement is so important because we need scholars, we need artists, we need people that are not disabled. We need people that are not in prison to also be contributing. We’re centering the experience. That means that we’re believing what people are saying about their lives. We need impacted people to tell us what is actually happening to them in order to understand it. That I would say is focal, and that’s what I would mean by, and I think disability justice principles are articulating when we say leadership of the most impacted. I come out of the tradition of independent living movement where one of my elders, Ken Mitchell always says, “We’re the experts of our own lives.” Which is a very radical thing.

Dustin Gibson:

At a time, 50, 60 years ago when it was widely believed, more widely than now, that disabled people couldn’t have any type of control over their finances, their living situation, have a job. It’s a radically different world from then. So for them to be saying experts of their own lives at that time, I think, speaks to the level of self-determination that has to exist within movements. That leadership of the most impacted is one of those things, I think, that is hearkening back to or calling in the self-determination piece that has to be a part of what we’re doing when we say we want rights for disabled people or to build power amongst ourselves.

Ashley Inkumsah:

Absolutely. What do you think the role of non-disabled, not only non-disabled, I will say white people. What is their role in this movement? What do you think their role is?

Dustin Gibson:

Yeah, I think their role is to be in principled struggle. Yeah, I oftentimes see, I guess, good-intentioned white people I would refer to them as maybe, liberals really. I’m taking liberal from Assata Shakur writings when she’s like, liberal is the most meaningless word in the dictionary, and then she goes on to talk about why. Because it means nothing. But I would say that, for those people it is to literally be in principled struggle. By that is like it’s rooted in something, this is our goal and actually have a thought behind it. What I see a lot of the times is liberal white people is just literally blanketly follow whatever person they think is the most impacted and is popular, and there’s no critical analysis behind that. We don’t need people that just can’t, are not forming their own thoughts and are just being led by whoever we want people to also be in that struggle of trying to answer some of those questions with us.

Dustin Gibson:

That is not like… if we truly believe our liberation is bound up with one another they have to see themselves as a part of this. When we talk about increasing access, when we talk about participating in a democracy, yeah, they also have to be people concerned with that. If they’re doing the oppressing, then they have to figure out how do they stop doing the oppressing. If they’re not the ones doing the oppressing, they have to articulate and find ways to come up with some of the same solutions that we are. By we I’m speaking specifically about black people. There’s definitely spaces where I believe it’s important for black people to convene and only black people. In those situations, there’s a bunch of ways to support.

Dustin Gibson:

Resources could be the first thing and that’s financial that’s you could even provide access, accessibility. There’s, I think to be more creative is, I guess, what non-disabled white people should do, be more creative with how they contribute. That’s not to say that there’s not a lot of people contributing now because there is.

Ashley Inkumsah:

Absolutely. Why would you say, I should say, that it is crucial that we adopt the disability justice framework and recognizing intersectionality. Why is this framework so important to the liberation of people with disabilities?

Dustin Gibson:

I think it’s important because we need a vision. We need something to build towards. I think another failure of the disability rights movement ended with legislation. It feels like, and I mean, this is something I’ve debated with with elders is it feels to me as somebody that wasn’t around, wasn’t born when these movements were taking shape and building, that the end goal felt like the signing of legislation with the enforcement, and we thought it would do something that it didn’t. I even think about Olmstead as a decision where there’s a lot of… Olmstead being the Supreme Court case with Lois Curtis and Elaine that they take it all the way to the Supreme Court in order to get integration mandate. Meaning that you can live in your community or have the option to live in your community rather than being in an institution.

Dustin Gibson:

Also Lois Curtis is somebody, black woman from the South in the South that creates incredible art too and also on the spot. Just drawing portraits of you as you stand in front of her and not even being in conversation with you and it coming out incredible. But I think that ceiling, there’s a cap on this colonial project. We are never going to be able to receive a full bill of rights from this project, so disability justice is important to adopt for people that are concerned with the lives of disabled people. It’s because it forces us to imagine outside of that, to build outside of that. When I think about abolition, which is also a part of disability justice, it is not something that is just telling us that we want to destroy the death making machines that are prisons that are institutions that are policed.

Dustin Gibson:

It is, we want the end to that to abolish that. But we also understand it as a project of absence, like Ruthie Wilson Gilmore talks about. That is a invitation into building something. That is a invitation into envisioning. Quite literally, just I guess in a sobering way, it is like being able to see ourselves in the future. Which I’ve worked with a lot of young people, young disabled people, some in jail, some not. That just thought of, “What do I look like in 20 years?” Is not something that’s common. I think disability justice is inviting people into just pondering that. With that, we can actually start to build that today, which people are building that world today but to the point where we can even imagine it. I think that’s what it does for us. Because even if disability rights…

Dustin Gibson:

Say the ADA did everything that it’s intended to do, we still have to ask that question of, now what? What do we have now? Now that there’s access, say in a world which I don’t believe there’s ever going to be 100% access. I think there will always be access conflicts. That’s also a part of disability justice is building the muscle and the skill to be able to respond in those moments. But so, if that all works and we have 100% access, then what is left is what we want to build. That cap on disability rights is not giving us that invitation to build that in a way. It’s asking for people to do something for it. We need power. We need to be self-determining and struggle through that together. We literally can’t get that from somebody else.

Ashley Inkumsah:

I’m curious, how did you get involved in this space? How did you get involved in the disability activism space and why?

Dustin Gibson:

Like I said, I came out of independent living, and independent living movement, and working at a center which was in Wilkinsburg, Pennsylvania, which is a borough of Pittsburgh. Yeah, I was, to be around people… I would hear stories of the center that we were in, the physical building, was a nursing facility built in the mid to late 1800s for Protestant women. To go into it on a visceral level, to see disabled people in power chairs, blind people, deaf people, all types of people with all array of disabilities in a space that was literally set up for people to go in and be trapped there and stay there forever and die there. To see them reclaim that and to see themselves as people that are one, capable, and then two, fighting for other people to believe in themselves as capable as well. That was just a intoxicating feeling for me to know that people are concerned with that type of power.

Dustin Gibson:

But then after that, that’s the time where the uprisings in St. Louis where my people are from, literally the place where my people are from. Simultaneously, police killing people in Pittsburgh, namely Bruce Kelly Jr. who was a couple of blocks away from the center that I was just talking about with diagnosed disabilities that the police are aware of murdered. From there, to be around people that are actively attempting to change that, that’s where I would say were some of the moments that started it. I mean, I have a longer trajectory than that, because I think the experiences that I had growing up, and I mean that continued to this day, absolutely shaped how I viewed the world.

Dustin Gibson:

I point to those moments are the moments in which I developed the language I was given game by my elders. Milt Henderson is somebody when I first came to Pittsburgh really just took me under his wing and showed me how to, I mean, really how to move, how to navigate the city, who was who, what was what. I developed a lot of language around that period and also a lot of courage. Yeah, does that answer the question? I felt like I just started rambling a bit.

Ashley Inkumsah:

No, for sure. I was just curious on how you got started. I always say that we all are the sum of our own lived experience and those of us who work in this space and advocacy and justice spaces, social justice spaces. Oftentimes yes, we’re shaped from the time that we’re very young to be on that trajectory, to do what we ultimately end up doing. So I just wanted to hear and yeah it’s an amazing [crosstalk]-

Dustin Gibson:

I know this is audio, so I’m just letting people know that I’m not in my head right now.

Ashley Inkumsah:

Well, thank you so much for this conversation. It’s been amazing. It was great to think out loud with you and really just unpack all these systems. It was amazing. I really appreciate it.

Dustin Gibson:

I appreciate you for having me and having this space.

Ashley Inkumsah:

I really appreciated Dustin’s expertise in abolition, and really being able to examine the disability justice framework through the lenses of the many interconnected systems of oppression. It was such a pleasure to chat with someone who is really working on the ground with so many organizations fighting for the liberation of people with disabilities. Dustin really laid out some actionable steps that both disabled and non-disabled people can take towards liberation. I really did come away from our conversation feeling personally empowered and galvanized, and I hope that you did as well. Now, you can find transcripts and American sign language interpretations for each and every episode of What’s Up WID over on our website at http://www.wid.org/whats-up-wid. To close out with our famous last words here on What’s Up WID paraphrasing one of our founders, Ed Roberts, “We need to get out there and change the old attitudes so we can build forward better.” Thank you once again, and I will talk to you next time.

Banner graphic of Tom Olin with text: Tom Olin, The Role of Artists in Disability Activism, September 24, 2021, What's Up WID.

What’s Up WID: The Role of Artists in Disability Activism

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Ashley Inkumsah:

Hello, everyone and welcome back to What’s Up WID, the World Institute on Disability podcast where we discuss what’s up in the disability community across the globe. I’m your host, Ashley Inkumsah, and today I honored to share with you my conversation with photo journalist and documentarian, Tom Olin. Tom started documenting the disability rights movement in the 1980’s with powerful thought provoking photographs, and since then, he has continued to use his photography to document historic disability rights events. It was such an honor to chat with him about the role that artists play in disability activism, and the importance of community organizing and I hope you enjoy our conversation.

Ashley Inkumsah:

Thank you so much for joining me, Tom to have this much needed conversation. My first question for all of our guests is always, how are you doing today?

Tom Olin:

I’m doing very well since you have called, and I am very much enchanted with WID and always have been. I mean, I have a little history with WID just because it was in the … It came about in the ’80’s at the time when disability was becoming something more than what it had been. More things were happening that we were doing things together. We were creating organizations. We were fighting on many different fronts, whether it be independent living, disability rights. Things were happening. There had always been history, but this was a time when a lot of people were doing different things in different areas, different parts of the country, and yet, we were kind of … It was kind of interesting, because back then, we had magazines, and we all actually … When things were happening, the magazines were actually telling us, the rest of the country, meaning that somebody, something happened in Berkeley, people in Michigan and Florida would know about it, which is a little different from today. Now, we have to go to people’s websites and figure out what is happening.

Ashley Inkumsah:

And social media, of course, yeah. That’s the new wave of the future, mm-hmm (affirmative).

Tom Olin:

I am very happy to be here. That’s a long answer to say I am enjoying myself being with you.

Ashley Inkumsah:

Yes. Well, I’m very happy that you are here, and WID is very enchanted with you, so very happy to be having this conversation, and I know that yeah, like you were mentioning, you’ve been involved with the disability rights movement since 1985. If you could share with us your background, how you got involved in the Disability Rights Movement, and disability activism, I would love to hear your story. Bring us back to 1985.

Tom Olin:

Well, you have to kind of go a little bit earlier. I grew up with dyslexia, which meant that I was a different … I was in a different category when … In school, if you had dyslexia, you were usually in a dummy class, slow learner class. I got a taste of what it felt like to be different. I got to hide that and I couldn’t hide that very well in grade school, but I got to figure out how to hide it in high school. I got to do oral reports and things like that to get my grade up. Then I went onto try to go to college. I ended up in college, but had to drop out after the first semester because I had to write. Oh, my God, I have to write? I can’t do it oral? Nope. They didn’t have any … We didn’t have any laws back then. ADA was very far in the future. Yeah, 20 years in the future.

Ashley Inkumsah:

Mm-hmm (affirmative).

Tom Olin:

It ended up in that time period, Vietnam War was going on, and I was … Well, when I dropped out, I was eligible. I ended up not going to Vietnam, but I ended up doing community work, and I ended up in a rehab hospital in Grand Rapids, Michigan, and that’s where I kind of, my soul and my what, my education of people with disabilities took a very sharp upward learning curve. I was in a place that had a lot of quadriplegics, paraplegics, people that need spinal work, people that didn’t have limbs.

Tom Olin:

It was a lot of different disabilities in a rehabilitation hospital where I met some good people that I’m … Some of them I’m still in touch with today, and some of them I’m actually working in a disability world with, and that’s when … Shoot, that’s what, 19- … I was 19 years old, and there was actually a person, Diane Coleman, who is a person that has a group called Not Dead yet, and she was 17 years old at the time, so but it was during that … That’s when I kind of skipped … I got to see people especially in traumatic injuries that would say almost a week after their accident, would be in a rehab facility, and it was like, okay, I’m going to live, or I’m going to die.

Tom Olin:

That was like … It was that black and white of … I was in a wing where the kids were my age that were … It was like, and then an orderly. I was an orderly at that time. It was high drama, real high drama. You got to skip it. That was about 10 years from that point, and I ended up in California, in Berkeley. Actually, I was at … Just before that, I was living in Brazil, on an island, and I said, “What do I want to do with the rest of my life?” I had nothing, nobody to talk me … Nobody who spoke English, and I could speak Portuguese, but not conversational wise. I ended up talking to myself and answering myself and I said, “Oh, okay, what do I want to do with the rest of my life?” It was a meditation life, and what it brought me back to is all the friends I had in the rehab hospital. I said, “Okay, that means I should get back into disability. Where should I go? If I can go anywhere in the world, where do I go?” Berkeley, of course.

Ashley Inkumsah:

Mm-hmm (affirmative), yeah, it’s natural. That’s where everything is happening.

Tom Olin:

There was that movement. There was all … Yep, yep, and so I went there … Went there with some friends, a family, and we … That was ’80 … It must have been ’80, I’m not sure, ’81, ’82.

Ashley Inkumsah:

Mm-hmm (affirmative).

Tom Olin:

But what was interesting is by that time, Berkeley, the activism … That was after the 504 demonstrations. You still had the organization. You still had a Berkeley Cell. I became an attendant, and I worked at the Berkeley Cell. I also worked at the University, at the disabled citizens program, which I really loved, because it was one of the first programs, attendant programs around, run by people with disabilities, and that’s kind of where, at that point, I decided to get into media too, because I thought, okay, that’s what should be happening in the disability world. I should be doing something with media, and so I was doing a video, and at that point, I was in a video production company, and I was what they called a assistant director to all that meant was that you … Whenever someone didn’t show up, you went and you did their job. At times, at quite a few times, I was a camera person with this big video camera, and we took Contra Costa County, community college there.

Tom Olin:

The Apple Valley Community College it was, and took a course, a camera course, and then from there, I became a photographer. But, at that point, I had to still work, so I still was an attendant, and then did the photography on the side. Actually, my first series of photos were a person out of the Berkeley Cell that had a chemical sensitive disability. It was kind of interesting how to capture a person with chemical, with a chemical sensitivity. How do you do that?

Tom Olin:

It was kind of a interesting way to try to figure out how to show other people, because it took … I had a great time with the photos, and I was also … With disabilities, I was at … In the Bay Area, there’s the Bay Area Recreational Program, BORP, that I was involved in, so I had not only … As an attendant to people with disabilities, I was in different programs that had involved with disabilities. There was a state advocacy organization called … At that time it was called California Association of the Physically Handicapped, CAPH, and it was the largest state organization by people with disabilities in the country. Definitely and that became a board member out of, in Contra Costa County in our chapter.

Tom Olin:

In the meantime, one of my friends, from the rehab hospital, Diane Coleman, was in California, I mean, in Los Angeles. We had been spending summer vacations together, as we were living together, and I mean, I’ll throw some names out that might not make any sense to you. But the group that was starting was with Paul [Longmore 00:12:03], Carol Gill, Larry [Voss 00:12:05], Anne Finger, Barbara [Waxman 00:12:09]. I mean, there was just an amazing group of people that … That was back in the early ’80’s that were … Just really culture was just as aware that we were just forming. The culture in those … The culture makers were there.

Tom Olin:

I mean, Paul Longmore and Carol Gill. I call Carol Gill the mother of disability culture. It was just so much fun at that time. Around that time, in ’84, in ’84, at our state conference, ADAPT came to town, or came down and gave a lecture, and both Diane and I just said, “Uh-oh, this look like what we’ve been wanting for a long time,” and so that fall of ’84, I had my camera, one roll of film. We went to our first ADAPT demonstration, and on that 24 roll, I mean, some of my most iconic photos came out of that first roll. It was a roll of handcuffs behind a wheelchair, which was probably one of the first real, something that had never been done … I mean, it was so … I was just really lucky that no one else was taking photos at the time.

Ashley Inkumsah:

It wasn’t like now.

Tom Olin:

Especially at that kind of-

Ashley Inkumsah:

Yeah, it wasn’t like now where everyone’s always taking photos.

Tom Olin:

Yeah, we’re getting some good people though.

Ashley Inkumsah:

Mm-hmm (affirmative).

Tom Olin:

I’m excited about what’s happening now also. But you’re right. Everyone with a phone can take a picture, and because a lot of times, it’s not being kept very technical. It’s what is happening in front of you that sometimes makes the news.

Ashley Inkumsah:

Exactly. Exactly.

Tom Olin:

I was really good at being at the right place at the right time.

Ashley Inkumsah:

Mm-hmm (affirmative).

Tom Olin:

I don’t call myself a very technical photographer. I just, like I said, am there at the right time … If I let myself just be, I kind of knew where the flow of the energy was going to be, and I could go and be at that point, and wait for that action. I was lost in a world, and people could talk to me and I wouldn’t even hear them. I just was … I could find myself at the place where I should be. That’s kind of how I started doing … I mean, at first, it was just for our local California Association of the Handicapped newsletter, and for the newsletter. Then other people wanted to have photos, and so luckily Diane had a very good job. I could be in a dark room doing pictures, and I also … At that point, I was not an attendant, except for a friend.

Tom Olin:

Every once in a while, Carl Longmore would, “My attendant didn’t show up,” and so I’d run out to get him up or whatever was needed. That happened, but I was also … I was a temp in the [LA Unified 00:15:54] as a teacher’s assistant, and I could work any day I wanted to throughout the whole year, and then also say, if I didn’t want to, if I was going to on an action, if I was going to travel somewhere, then I would just tell them that I’m going to be gone for that. It worked out perfect for me to be able to really put my growing talent to work. After a while, after years, I can still remember the point where I said, “Oh, I don’t have to have another job. I’m doing okay,” which that was doing photography. That’s when I said, “Oop, I guess I can call it professional finally.

Ashley Inkumsah:

That’s amazing. That is amazing. What role did you feel like you were playing within the movement as an artist, as a photographer, and what role do you think that artists play now in the movement for disability rights, disability justice?

Tom Olin:

Okay, getting right down to it. I like that. Well the thing is, I got to see something that a lot of people nowadays don’t get to see is that, because I was the only one doing photos, especially in that kind of genre of action advocacy, what was really great about that time period is that we had magazines. Those magazines had photos in it so every one got to see what was happening. You don’t see that as much today, and so what that meant is that when there was an action, like in Chicago, people got to look at it and say, “Hey, we can do that in our city.”

Tom Olin:

In fact, it got so good, I mean, everybody was so good at it, that I remember it was either the … I think it was the [Disability Rags 00:18:07] that, a group in Brazil, they had a disability group, and they heard all … They would read about disability and things that were happening. But until they actually saw the pictures, it was then they could say I could do that. We can do that too. Because there’s a thing that happened with a visual thing that … With dyslexia, I’ve always been really lucky to have a writer with me, around me, or someone that could say, “Here, do a good capturing. Do a slow story from this.” I’ve always been able to find someone to do that, and so not only could the visual say something, but a good narrative is always really good. I mean we lack-

Ashley Inkumsah:

Absolutely.

Tom Olin:

Today, we lack a lot of narratives that need to be out there today.

Ashley Inkumsah:

Mm-hmm (affirmative).

Tom Olin:

I mean, today … I mean, let’s say, right now we have people and in the South, I mean, in the East, and the South, where we got people that have no electricity for their ventilators. We have a crisis, but we also have always … I mean, for a whole year, we’ve had a crisis. We’ve had more than … We had around 200,000 people with disabilities die from something, from the virus that they died in congregated settings.

Ashley Inkumsah:

Yep.

Tom Olin:

That was rampant, and it still happened. In fact, it’s growing again, just like the [inaudible 00:20:03] is growing in a regular population, the disease is growing in the institutions and congregate settings. What I’m kind of saying of that, is that where is our narratives? Where is our visuals on that? Those things we don’t have out there anymore. If you don’t have those things, people of like mind can not say, “Okay, we should do something.” This is why they have that feeling. Back when we were doing it with the ADA, people could say, “Oh, gosh there’s a movement. I belong to it. I belong to this. I have this … I have other people that think like me, and are with me.” Nowadays, yes, you know that there are people that probably think like you, but you’re not together.

Ashley Inkumsah:

Mm-hmm (affirmative), absolutely.

Tom Olin:

You’re not working together.

Ashley Inkumsah:

Yeah, you know what I think?

Tom Olin:

Yes, some people are … Yeah?

Ashley Inkumsah:

I think it’s maybe there’s an oversaturation because there’s so much multimedia out there. There’s so much, it’s hard to find your community when there’s so much multimedia, and also the 24 hour mews cycle, I think there’s only certain kinds of glamorous stories that are told, and people with disabilities are often left behind because the story isn’t glamorous for the mainstream media, so to speak. I think that has a lot to do with why nowadays these stories aren’t being told.

Tom Olin:

Yep, mm-hmm (affirmative). Well, it’s the visuals … Sometimes it’s not the narrative. Like I said, until people saw some photos and stuff like that, you tend to take that into … One visual can really unite some, a group of individuals, an organization, and we don’t have enough of that. That’s where the artists should be coming into play. I mean, what we … As artists, one of the things, what we try to do, we are trying to capture people’s experiences. Whether they are locked in a congregate setting, whether they’re being taken away in a guardianship, whether the access is so bad that they can’t even get downstairs, you have all those things, and what an artist … What I believe artists in our community, in a disability community should be doing, is they should be capturing the people’s experiences, with photos like art, so that one might value … You want to place a value on that person so that people can see what another, that person that is in another life is experiencing.

Tom Olin:

You can’t make that connection, then it’s just … It’s whatever you do might be nice looking, might be okay, but you’re not changing things. I mean, I want art to be something that we can change into for something. Artists can do that. There’s just too many … The Civil Rights Movement … When the Civil Rights Movement started with King, and [inaudible 00:23:51], they had great buttons, they had things that they kind of came on to, the artists. They had poets that came up and say something. They had some academics behind them. The AIDS Movement, we had really good artists that kind of said things to people, that brought people together, and were kind of … It’s kind of funny.

Tom Olin:

We had Crip Camp, which was an amazing film that brought us together for a bit, that we could have that familiarity of people coming together, and I mean, I’ve been in congregated settings where groups of people bonded together, because they were in congregate settings and camps, even if it’s a camp or if it’s a school that people are in. Places like that, even on a commune, people are together, and those … That was a really nice thing about Crip Camp. You felt like that communal experience of people with disabilities coming together, and loving each other, and all that. But yeah, at the same time that that was happening, COVID was happening.

Ashley Inkumsah:

Mm-hmm (affirmative).

Tom Olin:

All that great experience of being together in that film, the other side of what was happening in reality is we were dying in these congregate settings that were the first thing, a lot of people dying were the nursing homes, up in the state of Washington. Then a lot of us said, “We should do something,” and it was like our big organization, APRIL, NCIL, and other organizations tried to get ahold of our representatives and Congress people, and it took weeks before they could come back to us. They had other priorities. People with disabilities were still at the bottom. Crip Camp, we thought we were … We went up to the top [inaudible 00:26:34] with everyone else, and then COVID hit, and we were realized that we were treated like we were people on the bottom, and that is still happening.

Ashley Inkumsah:

Absolutely.

Tom Olin:

Still happening.

Ashley Inkumsah:

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Ashley Inkumsah:

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Ashley Inkumsah:

Why do you think that organizing is a way for people to enact change especially in today’s day and age? How can people start to mobilize and organize to change the way that people with disabilities are viewed and neglected?

Tom Olin:

Well, it comes back to just old time organizing. That means, you get together with groups of people. You find it … It’s like if you wanted to … Let’s say something was happening in your neighborhood, in your community, which I want to use, because that’s … In your community is where your justice is going to happen nowadays, and so if that happens, and you talk to a friend, you talk to a friend and you say, “This is what I say.” If that friend says, “Oh, I agree with you. We should do something,” and you start with your friends. A lot of us have connections with other people in other organizations. Then once you have a couple of friends, you reach out to either other organizations, or other people. You keep close. You don’t want to give it all to an organization. You want to still keep it to yourselves and what you think is what is driving you at that point. If it is nothing, then it will turn out to be you’re the only one that wants it then.

Tom Olin:

But if you can get other people together, and that’s the whole thing is getting people together, and it’s not just … It’s easy to do a post, a Twitter, or something, Instapost, Instagram, and get a whole bunch of people behind that might say something, but have them come face-to-face to you, or a phone call that goes, that number comes down to something else. I think what’s really important for us now at this point, is to start, is just talk to each other again. We’ve forgotten how to talk to each other. Back in the movement when we were doing ADA, fighting for the ADA, we had phone trees. We would be talking to people. That is not happening, and I’ve seen people, good people post stuff on the internet, and that person … Because we’re talking right now. You notice my inflection. You know when I’m excited. You know when I’m not. You know when I’m even asking a question before it comes to you. That doesn’t happen on social media. That does not happen on the internet.

Tom Olin:

There are times when you will speak, and people will think that you’re saying something else, and if you say the wrong thing, that might be the last thing that you ever will hear from that person, or they will ever hear from you. I mean, it is just … There is something … If you talk to each other, that would probably never … You could have worked it out, or something. That’s where I think working … Organizing now is working with groups, working small, and finding people. I had a group that started with just myself and a person, but I said, “Hey, are you into this?” Let me see, it must be maybe three months ago.

Tom Olin:

Today, we have like 35 people. We have directors, and other people in independent living. We have three institutes on disability. We have economists. I mean, we have people that are just … We have a person in Canada. It’s all grown up just because we took a couple of us decided, okay, let’s do this. What can we do, and invite a couple of our friends, and it grew into something. But now we have something that we actually share with the White House, that we share with ACL. We share with FEMA. Things that it would have been hard to do with one person, and very important … Important enough that 35 other people say, “Hey, I want to be connected with this.” Organizing starts with just being in touch with another person.

Ashley Inkumsah:

Mm-hmm (affirmative). I love that you mentioned it could be either in-person or over the phone, because of course, there’s people with disabilities who can’t be on the frontline, who can’t meet up in person, so I think having that phone conversation, hearing each other’s voices is so also equally important to organizing.

Tom Olin:

The internet is really good in the sense that when I talk to a non-verbal person, then that is … Then I do it one-on-one. Also in other groups, if you know … That’s what’s so nice about Zooming is that you can put it in the chat room or whatever. I mean, you have people with all different kinds of disabilities, but in the end, you have to make sure … I mean, one of the things about even having a group, is that you have to keep on talking with those people in your group. You just can’t leave it all up to, oh, we’re just going to put it on paper, da, da, da, and okay, you have a Zoom.

Tom Olin:

Even though you have a lot of people together, you still need to reach out because of those people that are on our Zoom, there are people that want to say something, but for one reasons or another, don’t say something. If you really want to get, have people involved, and you do need that one, that’s when you then either text that person, or call that person, and say, “Hey, I didn’t see you last week, or how did you think about that Zoom? What did you think about what we’re going to be doing?”

Tom Olin:

But, you really need to get out there, because some of the disabilities … I mean, I work in the area with a lot of people that have psychosocial issues, and sometimes, it comes out during a conversation, and sometimes it won’t come out … I mean, their disability is so that they have anxiety or something and you need to talk to them a different way to get their input into a group. We’re talking everything about, except for the art of that we’re talking about. But today, trying to get our images, our art out there, is still a one-to-one thing in a sense that we need an audience, and there are just really good artists out there that … I mean, I just got done finding a young photographer … I call him young, he’s 28 years old. He’s young to me. But, to me, it’s that generation that I can be … I’m 70, 71, what year … Yeah, 71 years old, yeah, 71, and so I don’t need to do everything that I want to do.

Tom Olin:

I want to be able to be there for the people that want to do something, and I have enough contacts, have been around a lot, so I can just be an old elder. That’s kind of what I want, and I get to show my love that way. One of the things … It’s kind of funny. One of the new photographers that I’m working with, he’s also very much like Miles Horton who was a person, a civil rights person, who started the Highlander Center, and one of the things he said is you can’t be a revolutionary. You can’t want to change society if you don’t love people, and that’s the basic of it.

Tom Olin:

When you talk to another person, it’s that love that you give that person, and I always try to give any one new person unconditional love, meaning that I don’t need to trust you. It might be three strikes later that I might say, “Okay, maybe I shouldn’t” … But right off the bat, I’ll trust you and I really do that all my life, and it has worked well for me. In this time when we’re all kind of secluded and whatever, we need to have that kind of trust when we talk to other people. If you don’t have that trust when you’re out talking to the other people, or trying to organize, if you don’t … If you can’t have that trust, it won’t go anywhere. It will end up in a different world down the line. The whole thing is, is that when … We change the game when we all work together. It’s so amazing what working together does for our community.

Ashley Inkumsah:

Mm-hmm (affirmative), I agree.

Tom Olin:

I’m really enjoying being able to work with all generations. I think that’s very, very important for just our generations, because they’re … No matter what happens, our being in a disability community is something that is going to keep on going.

Ashley Inkumsah:

What lessons have you learned over all of these years that you’ve been organizing, and also as a photographer fighting for disability rights? What lessons have you learned along the way?

Tom Olin:

When you treat people as persons, and they come to respect you, they come to know you, there’s … I have a lot of great friends all over the US that I get to not only be friends with and stay at their houses, but I get to cook with them. I get to break bread with them, and we get to pass on stories, which is really, really good that you can do that and be able to do that because one of the things about photos and organizing is that you need to … Photos, you need people to photograph. You need actions, so I get to be called to do things.

Tom Olin:

In the early days, I remember once, I was so sad that I was … I was traveling to the place that was going to take me two hours, and it took me three hours, and I thought, oh, my God, the march is going to start, and I’m going to have to figure out where they’re out, and so I get up to the place where they’re going to start, and they’re all there. I said, “Oh, God, great,” and so I get my camera stuff out. I go out and I said, “Ah, I’m glad you didn’t start.” They said, “We couldn’t start without you because if we started without you, and you didn’t take any pictures, then what we did doesn’t happen.” [crosstalk 00:40:49]-

Ashley Inkumsah:

Mm-hmm (affirmative), they say … There’s a saying that people say, millennials say, pics or it didn’t happen. That’s a saying that’s very popular. There’s no pictures, it didn’t happen.

Tom Olin:

Exactly, exactly, and that was exactly what they, was in their minds. I felt really bad, but it worked out of course. But, it’s nice to be able to … I mean, right now, I’m working with people in Pennsylvania, and Colorado that I talk to every other day, or every day, every day. Yet, I’m in this broken down tour bus outside of Austin, Texas that doesn’t go anywhere. I don’t even have a vehicle to go anywhere. But, I’m all over the place, and being able to talk with friends, and do things with friends.

Ashley Inkumsah:

Mm-hmm (affirmative), what advice would you give to young people, the young people of today who are hoping to use art photography to enact change in the disability community? What would you tell them?

Tom Olin:

Find organizations that you can give your art to, and I say that almost … Art is something that in anything … Actually it’s just a personal thing that when you give something to another person, it does something. I used to give my photos free to organizations, and it has come back 10 fold just like the proverb. Now people, when they want to use my photos, they’ll call me and they want to pay me, because at times, I had given them something, and I still do. If an organization … It’s a big sliding scale.

Tom Olin:

If they can’t afford a photo on their walls, then shoot, for me, it’s better to have something there than not, and for those organizations that can not, that can afford, then they pay me a very nice price, and it’s … That means that I can give … If they give me a good price, I can give a good price to another person. It just works out really fine. I tell people, to artists, work with your friends. Work with the organizations. Become friends with those organizations. If they have something, be artsy with them, because at a time, they will hire you. It might be two years after they have some money, and they remember you. They remember how a nice person you were, and they will. It just comes back to you. You don’t have to plan on it. Just being nice has its rewards.

Ashley Inkumsah:

It sure does, absolutely.

Tom Olin:

I mean, and definitely, I mean, you have artists … Sometimes, you really have to get into where you’re at, and your art will reflect it. But as soon as you turn your art to try to help others, then it becomes something else. Then that’s where your art can really make a difference and look … I would tell anyone to look at the past artists. Look at the people that have changed the minds of people. Keith Haring, from the AIDS Movement is a wonderful example. There’s just some really good people out there, and I find it … Especially for the young. Push the artists. Push the older artists to start doing some art that makes a difference. Right now, there’s a lot of art out there with a lot of artists my age that I can’t understand that is what they’re seeing out there in the world, and they’re not trying to make a difference.

Tom Olin:

I don’t know what kind of difference they’re trying to make. Sometimes it works so academic in the world. I know WID right now, and some other organizations, were very much into what we can do with children, and it’s especially an institution that has … I say, “Hey, young artists, think about how you can display kids that have lost their lives behind locked doors, behind frosted windows. How can we show the rest of the world that they’re losing other people that could be friends of theirs behind locked doors?” I think the future is our young artists. I think they have, they can have, and they should have a lot of help from a lot of our organizations. Actually, anytime I sneak anywhere, I tell organizations to always have an art budget. In their annual budget, there should be a budget for art, so they can have it on their walls, so they can support artists, their cultural workers.

Tom Olin:

We should always support our cultural workers. It’s a very exciting time to be in right now. It always is because there is a lot of chaos out there, and it’s during those times of chaos, when not only we can grow, but society grows. We’re at that point, so what we do right now, is some … What we do individually, and what we do collectively, it’ll resound for years to come. This is the time. That’s why you hear people talking about infrastructure. It’s out there, but of course, the main society doesn’t think of infrastructure with us, but we need to have that input, and have that infrastructure to include us because we need to be included in the community, and that’s where we need to have that justice, disability justice to influence our community.

Ashley Inkumsah:

Absolutely. The thing about art, like you said, it resounds forever. Even when we are all gone from the world, our art will still be here, so it’s powerful for sure. Mm-hmm (affirmative), absolutely. Well, thank you so much once again. I had so much fun chatting with you. I’m so happy that we finally got to connect.

Tom Olin:

Me too.

Ashley Inkumsah:

I had such an amazing time chatting with Tom. His photographs truly help tell the most powerful stories and galvanize the disability community. It was great to learn how his own lived experiences kind of set him on this path of fighting for disability rights, and Tom’s work really does serve as a reminder of the importance of art in activism, and it was such a pleasure to learn from him, and to have this fruitful conversation. Thank you to Tom for chatting with me, and thank you for listening, watching, or reading today’s episode. You can find transcripts and American sign language interpretations for each and every episode of What’s Up WID on our website at http://www.wid.org/whats-up-wid. As per usual, our famous last words here on What’s Up WID, paraphrasing the words of one of our founders, Ed Roberts, we need to get out there and change the attitudes so we can build forward better. Thank you so much once again, and I will talk to you next time.

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What’s Up WID: How COVID-19 Transformed the Lives of People with Disabilities Transcripts

[music]

Ashley Inkumsah:

Hello everyone, and welcome back to What’s Up WID, the World Institute on Disability podcast, where we discuss what’s up in the disability community with activists and advocates across the globe. So today, I am so happy to share with you all my conversation with Damian Gregory. Damian is the founder of an organization based out of South Florida, called Nothing about us, without us. Damian also has cerebral palsy, and the work his organization does revolves around advocating, consulting and educating to ensure the inclusion of people with disabilities. So a couple of weeks ago, Damian and I had a conversation about how the COVID-19 pandemic really transformed the lives of people with disabilities, and how we can take what we’ve learned from this pandemic to create a society that is more inclusive of people with disabilities. It was an absolutely wonderful conversation, and Damian is really and truly a class act. So grab yourself a snack and I hope you enjoy today’s episode.

Ashley Inkumsah:

I’m so happy to have you as a guest today, to have a conversation about the ramifications of COVID for people with disabilities and the dangers of returning to a so-called, quote unquote normal. My first question for all of our guests is always, how are you doing today?

Damian Gregory:

I’m doing pretty good. I mean, today has been a great day. Yesterday was very eventful, because of the anniversary of the Americans with Disabilities Act. And I chaired a meeting yesterday which was only my first meeting in person since COVID, and so there were a few apprehensions just because I’ve known all my board members for a long time but it’s just being in a physical space post COVID with more than five people is a little bit jarring and a little bit daunting, but it was also nice to be in the same room as people that I’ve seen in Zoom boxes for months. So, it was kind of a mixed blessing day. Today is kind of a respite from that kind of activity. It’s been a day, mostly at home answering emails because I work from home anyways. So it’s a nice respite from what was going on yesterday, but it’s been a good day. We’ve been blessed with thunderstorm, which is always awesome in Florida, particularly, this time of year, we have thunderstorm pretty much every afternoon.

Ashley Inkumsah:

Yep. I was going to say, yeah, this time of year in Florida, the weather is insane.

Damian Gregory:

Yeah. It is.

Ashley Inkumsah:

Just glad that you’re safe and sound. That’s all that matters.

Damian Gregory:

Yes. And I feel snug and happy. So,

Ashley Inkumsah:

Mm-hmm (affirmative). All good, thanks. That is wonderful to hear. So far listeners or audience members who are not disabled, or may not know what it’s like living with a disability, or even if they do have a disability, every disability is obviously very different. So in context of your disability, I want you to explain some of the challenges that you face navigating the world prior to COVID. How was that like for you?

Damian Gregory:

Well, I have been very blessed. I don’t want to start way back. I’m an old man down, middle aged. I don’t want to start way back on a hot Spring day in 1974 when I was born. I’ll skip to the interesting parts. For me, navigating my way through society and the world has always been interesting and always a challenge, but always something that I’ve welcomed. COVID has been a different kind of creature altogether, because all of the things that you knew and all of the things that were set up to make your life run and function in a certain way, all of a sudden have been kind of up ended and turned upside down. So and that has been the interesting thing about COVID.

Damian Gregory:

And I’ve found it interesting that, I think as people with disabilities, we learned kind of have to go with the flow a lot of the time because you could plan your day perfectly, and then you use paratransit, let’s say. And your ride doesn’t show up, and all of a sudden the meaning that was so important that you prepared for, for months, doesn’t go according to plan, or you arrive late or whatever. Or you end up going to a restaurant, and then all of a sudden, whoops, you didn’t anticipate, now having to check whether there was a way for you to get in comfortably if I have a wheelchair. And then all of a sudden the meeting that was supposed to be a business meeting or a date turns into something else, and that becomes all about disability.

Damian Gregory:

And so people with disabilities have had to roll with it for quite some time in big and small ways just to cope. So whether that’s something as simple as your personal care attendant not showing up because they had a flat tire, and that has a cascading domino effect on your day, that’s just a normal course of business for people who rely on others in order to get through their day. So, I mean, it’s been interesting watching people that are neuro-typical lament all of the inconveniences that, in my mind are minor, when you consider all the things that people with disabilities go through every day, on a regular basis, sometimes two and three events in a day. And I say that not as a voice for anything, I say that as just a reality of what it’s like to live, work and be in a space when you’re a person with a disability.

Ashley Inkumsah:

And how would you say that changed? When COVID happened, how did you begin to navigate the world in the COVID society and in what ways was the world may be even more accessible to you?

Damian Gregory:

Well, I’ll tell you one way that it changed, that was a little bit unexpected. Way back in 2014, I moved back into my family home with my mother and my grandmother who was ailing at the time with Alzheimer’s disease, because we decided that we would keep her at home throughout the duration of her illness, because sending her to a nursing home was just not a viable option. That’s not how we roll in my family. And one of the decisions that we all made was that we were going to do what we could as a village to take care of her. And what that meant in my case was, I wasn’t able to do a lot of the physical things because of my physical limitations. I have cerebral palsy, and so I use a wheelchair pretty much a 100% of the time. And so what we decided to do was, I couldn’t do the physical things but I could do the supervision certainly for her home health, et-cetera. Well, she passed a couple a years ago, in 2017, almost what now, four years ago.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And I decided that, I didn’t mind the experience of being at home, because I was with my twin brother, also has a disability. And it was just comfortable because we had been always a very close family and we were always ones that people kind of looked out for and took care of. Well, it was nice to kind of return the favor now. So that’s what I decided to do. So fast forward to 2020, we had set things up very much where, I have to tell you that for about a year and a half prior to COVID, I’d started my business, and we had set up all the things so that my home was completely accessible business wise, and I had a personal care person who came in and did cleaning and assisted with making sure that my clothes were all together and all of that.

Damian Gregory:

Well, when the pandemic hit and we heard about how contagious it was and the fact that the person that was providing personal care would be, basically we decided to go on lock down pretty early. But we knew that that was not an option for the person that provided personal care for us. Well, what that meant was we decided that we would tell him that for the immediate future, we will not be using his services. We gave him a little [inaudible 00:10:50], so he had paid for, I think, I want to say three months into the pandemic, because we had no idea at that time what the pandemic would look like. And then eventually he left. Well, what that meant was a lot of the things that I took for granted, the ease of things with having somebody dedicated to do personal care and do laundry and do the housework stuff, all of a sudden that kind of got a little bit unorganized.

Damian Gregory:

So it took a while to get used to the new normal. So that was a challenge, but then what was interesting was so many things became more accessible in a way that we did not expect. Like my brother has worked at Florida International University now for about 10 years. And one of the challenges that he has always had is how to navigate the physical space of the university. Like if he needs somebody to open a door or do something like that, it was always a challenge. And would you be asking students and now with all of that work. Well in a still COVID space, you’re comfortable, you’re at home, you’re in your environment where if you need somebody to open door, you just ask Alexa, hey, Alexa call home and he call home, and then somebody does something as simple as opening a door for you.

Damian Gregory:

For him even, managing, navigating through the lunch area was always a challenge because there are tons of students there and it’s like, would I ended up wearing some of my lunch, well, that doesn’t happen at home. I mean, certainly you miss the personal interaction, but there are advantages to it. As far as work goes in the COVID space, it’s been an interesting pivot for me because a lot of what my company does is education and teaching people, usually small groups of adult learners about the disability experience. Oh, well during COVID, we had to go virtual and go to Zoom. And so you do some of that intimacy that being in a classroom, we’ll say 10 people gives you, but you gain something else in that you learn how to connect with audiences in a different way.

Ashley Inkumsah:

Right.

Damian Gregory:

And it took a while to get there, but I think we’re in a space now where families feel comfortable doing the classes that I teach. On Zoom, it’s not always as connected as I’d like because when they are looking at in-portrait in a gallery view at all the faces, it’s hard to know whether you’re connecting or not connecting, whether somebody is looking at their phone or paying attention to what you’re saying, but it is something that is a new skill. And I’m all for learning new skills.

Ashley Inkumsah:

Mm-hmm (affirmative). Absolutely, I think we’ve all had to learn quite a few new skills in this past year and a half. And yeah, definitely working from home has definitely been something that has actually shown in a lot of businesses. It’s increased the productivity in a lot of businesses, but why, in your opinion especially as a CEO, I want to hear your point of view. Why do you think that working from home is something that should continue for people with disabilities?

Damian Gregory:

Well, I mean, it removes a lot of the barriers that I don’t think a lot of people think of, particularly folks in the work world. Some of those barriers include, if you have a physical disability and you’re not able to do activities of daily living. And I’m going to break that down a little bit because sometimes when you say activities of daily living, people don’t really understand what you mean. If you need help to brush your teeth and go to the bathroom and take a shower and get dressed and do all the things that you need to do in order to even begin your workday, and that is compromised in some way, be it a personal character that doesn’t show up or is late, or they’re caught with another client, or has something personal to do, that means that everything that you need to get rolling has been compromised in some way.

Damian Gregory:

So I mean, that barrier is removed as a Zoom user, your office is your home. So all you need is a camera and a phone and you could do business just as efficiently without going through those things. Then it depends how far your commute is from where you work, from home to work. I mean, often for people with disabilities who don’t drive, that is a huge challenge. How are you going to get from home to work and be on time. If you take fire transit or special transportation, it’s a shared ride service. So there’s a high percentage no matter where you live in the country, there’s a high percentage chance that you will be late or harried or both, just to get into the office. And that is even before the workday has been gone.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And then if you need any sort of assistance, yeah, in terms of a voice to the bathroom or toileting or any of those things, how does that work? How do you navigate that in a world where you’re expected to function completely independently? You can’t ask your supervisor to help you go into the bathroom. That’s just not doable.

Ashley Inkumsah:

No.

Damian Gregory:

I mean, and that’s a real concern for a lot of people who have physical limitations and have dexterity issues. So, I mean, for all of those reasons, it is good to work at home. It’s also good to work at home because of not having to reverse all the processes that I explained earlier, because when you’re done with your work day, if you don’t drive, you need to take paratransit back home. And often for lots of people with disabilities, physical disabilities specifically, that means spending more time than you would if you were driving in your car alone to get back home.

Damian Gregory:

So, I mean, and we all have only 24 hours in a day. Right? And it is exhausting to just do all the things that we take for granted just in our regular day. But when you are a person with a disability, you have layers often of complications. So for all of those reasons, it’s really good to stay at home. Plus frankly, just the ease of your environment. Being able to do things that sometimes people don’t think about. Like, I have psychotic nerve issues and I have back pain issues. And for me being able to take 20 minutes out of the day to take a stretch break or relaxation break, even if I add that 20 minutes on later, makes all the difference in the world and reduces my fatigue a great deal.

Ashley Inkumsah:

Yes. It sure does.

Damian Gregory:

You know?

Ashley Inkumsah:

Yeah. It’s unfortunate now that so many people with disabilities are now being asked to come back to work and those accommodations are really being taken away. It’s very unfortunate. And as so many people are now echoing the sentiment of going back to normal, what are some of your fears that you have of so-called going back to normal?

Damian Gregory:

Well, it depends what normal will look like for you because some businesses have decided that they will do a hybrid normal, which I don’t think anybody understands fully what that means yet. I don’t think they understand what it means completely, to be honest. Well, one of the fears is that all of the gains that we have made by realizing that you don’t have to be in a physical space to feel connected with people, I fear that that will go away and people will go back to cubicle veil as I call it, because that is the way the work world has always worked. And like I explained, I mean, for a lot of people with physical challenges, it’s something that we have worked around and made work but it’s not always the most convenient and efficient way to function.

Damian Gregory:

I have to say that I am a huge proponent though of people with disabilities being integrated into work culture, if not into the same physical space because I think that goes a long way towards creating diversity and inclusion. Because so often people with disabilities are excluded from the social aspects of life, whether that’s work life or social life, because what do your coworkers do after typical day, they go to a restaurant to a bar or-

Ashley Inkumsah:

Happy Hour.

Damian Gregory:

… hang out or whatever. And typically those with disabilities are excluded from that part of it.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And so I’m a little leery of touting only the positives of being away and being in your own virtual space, because I fear that ultimately it’ll lead to more isolation if the people with disabilities are only working remotely because it’s easier.

Damian Gregory:

So I think there has to be a way to create inclusion that doesn’t demand you being in a physical space. And one of the things that’s been really cool is, I’ve gone to a lot of virtual happy hours in the last 18 months. And even I’ve gone to applause our high school reunion, and then college reunion via Zoom. And what was interesting about that was, I just didn’t think that it was something that was even practical or doable, but it worked.

Ashley Inkumsah:

Yeah.

Damian Gregory:

We sat there, we all said, okay, we’re going to get whatever drink of choice you want. And we toasted each other because it’s not about the what you drink and what you eat, it’s more about making the collection with other humans.

Ashley Inkumsah:

Mm-hmm (affirmative). Yep.

Damian Gregory:

So if you think about it, when you go to a restaurant and ask, did you have a good time at dinner? You’re really not talking about food. You’re talking about the company, and the feeling that you got as you left.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And I mean, unless the food is spectacular and never had that particular entree before, you’re not likely to remember the food, unless you’re a foodie like me. I remember specifics of, oh, the steak was undercooked or whatever. But generally, most people don’t remember that. They remember the conversation you had, or the way you felt, or even if the service was bad and you guys made a joke about it, you remember those details.

Ashley Inkumsah:

Absolutely.

Damian Gregory:

So, I mean, you’re able to do that in a virtual space and still be included without being physically beside each other. So I think it’s going to be an interesting thing to see what it shakes out to be this new post-COVID work world that we all are talking about.

Ashley Inkumsah:

Yeah. I think we’ve all learned so many lessons and we’ve learned that so many things could work that we previously had no idea about. And yeah, I think it’s about building forward better. It’s not about going back. It’s about building forward and taking what we’ve learned and seeing how we can implement that into our society for sure.

Damian Gregory:

And realizing that it doesn’t all have to be one way. Right?

Ashley Inkumsah:

Yep.

Damian Gregory:

I think one of the challenges that a lot of bosses are having is, they’re accustomed to being the boss and supervising 20 employees and seeing them all out there by their computers. And they feel like if they’re not able to watch them as they type and as they’re on the phone, then it’s not work. Well the reality is, you don’t know what they’re doing on their computer and you don’t know who they’re talking to. So, I mean, what difference does it make whether somebody does the job until five o’clock or they take an hour in the day to go pickup their son or daughter, or have a long lunch, or skip lunch altogether because they started early at 7:00.

Damian Gregory:

Well, one of the things that this pandemic has taught us is we need to be flexible. And flexibility is a skill that, like I mentioned before, people with disabilities have always had trouble with. I mean, it’s not something that is new to us. And people with disabilities are, as a rule, very able to deal with whatever ebbs and flows life brings.

Ashley Inkumsah:

Absolutely. And it shouldn’t be that way though. I said that on our last episode of our podcast that, it really shouldn’t be that way. People with disabilities should live in a world where they don’t have to be so resourceful and have the gumption to come up with a way to navigate the world. The world should be accessible already. But unfortunately, despite the ADA recently having turned 31, we still have a long ways to go for disability rights.

Ashley Inkumsah:

Can’t get enough of What’s Up WID? Great news, we’ve recently welcomed a new addition to our What’s Up WID franchise, our monthly newsletter. Our What’s Up WID newsletter highlights our latest blog posts, podcast episodes, videos and news media features every single month. To sign up visit our website @www.wid.org and click on sign up for email updates from WID, located on the left and subscribe to our monthly newsletter so you never miss out on what’s up with WID. What are some changes that you would like to see made in terms of our society in the way that it addresses people with disabilities?

Damian Gregory:

Well, I think people with disabilities are still viewed more as patients rather than members of society. We’re viewed very much on the medical model like we are to be fixed, or even to be revered or admired because of the challenges that we’ve come through. What I would like to see is people just realizing that disability is such a normal part of life, that if you live long enough and you experience things long enough, you will end up being a person with a disability, whether permanently or temporarily. So I mean, while what I do sometimes is something to be admired, it’s not because of my disability. It’s because of my character and who I am as a person. Now sure my physical limitations are a part of that, but that’s not the only part. It’s a mixture of many things.

Ashley Inkumsah:

And I want to pivot a little bit and I want you to talk a little bit more about Nothing About Us Without Us. I want to know how did it come to be and what projects you are currently working on within your organization?

Damian Gregory:

What we do at Nothing About Us Without Us is we do education. So as part of that mandate, I work with various nonprofits that named Miami, Fort Lauderdale area to educate. Typically, it’s people that are non-disabled on issues of disability. So whether that’s a sensitivity training as to what it’s like to be a person with a disability, we do experiential exercises where I would come up with an exercise about navigating your workspace as a wheelchair user, or somebody who’s blind, or somebody who is had other challenges to kind of let them experience even for a moment the things that they take for granted as being non-disabled.

Damian Gregory:

So I do that, and then I do some teaching at non-profits on the disability experience as well. What was it like before the ADA? What did that mean? I grew up in a time, because I’m middle-aged now, where the ADA was not something that we took for granted at all. And so the going to a restaurant or going to even school, you had to find out before you went to school, before the school year started if you switched, whether the school was accessible, whether there’d be bathrooms that you could use, whether in the cafeteria, how lunch would work, you’d have to figure all of that stuff out. Now, typically not that all architecture barriers have been removed. I graduated high school in ’93, so many of the barriers that existed even at my high school have gone away. It doesn’t mean that all the architectural barriers are gone but a great many of them.

Damian Gregory:

I think, now the biggest challenge that we have to face is the attitudinal barriers that come with a group of people that are millions of people strong, who now are expecting acceptance and inclusion, and will not take no for an answer. And a society that has been generally leaning towards a more medical model of disability with this idea of people with disabilities being pretty much taken care of and not having to work or do any of the things that this generation of folks says, yes we want to work, yes we want to date, yes we want to have sex, yes we want a life, yes we need representation in media, yes. We want inclusion and not only as a vague word, but we want it as something that is an active part of our existence and we want it everywhere and we want it now and we don’t want it over time and we don’t want it incrementally.

Damian Gregory:

And we don’t want it to be given to us grudgingly, we’re here to take it. And that’s where we are now in terms of the disability rights movement. And it’s fascinating because I mentioned that I’m middle age. One of the things that concerns me is part of the thing that I think happened with my generation and those that are in their late 30s, early 40s and beyond is, we had the fight first off, so we appreciated it a lot more. For example, I was always a student of [Metnerd 00:35:22]. I always believed in being a part of government whether that’s student government or big boy government, as I call it. But I ran for office in middle school and in high school and I won all three races that I ran in. And what that did for me was it created confidence because I felt like I was accepted. And my peers really thought that I had something to contribute. But what it also did was, it made me realize that things happen step by step.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And what I’ve noticed in the younger generation, and I’m going to sound like an old man who’s saying kids get off my lawn now. What that does is a lot of the things that this generation wants and rightfully deserves, they don’t have to fight for in the same way that we did. And what that does is it creates a sense of entitlement but it also creates a problem where… When you have to fight for something and it’s hard fought and some days you will be broken by people’s ignorance and just you can’t believe that you’re having such difficulty explaining why you need an accessible bathroom, or why you need a note taker in your advanced English class. Like I had to explain to my high school teacher, that is something that this generation, because they don’t have to fight for it, there is a sense of apathy about it just being available. And so I watch a lot of news because I’m a news junkie, and the first half of my professional career I was actually a journalist.

Ashley Inkumsah:

Oh, wow.

Damian Gregory:

Yeah. That was a lifetime ago.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

But what that does is you realize that there are so many things that if we don’t keep fighting for them and keep renewing our desire to engage in, and they go away very easily. I look at the voting rights work that people are fighting for in many States right now, and if anything that experience has underscored to me that the Americans with Disabilities Act may exist and may be codified into law. But unless we keep pushing the envelope as to what we need, like making places accessible for voters, like being involved in a drop box file so that if your county had 20 drop boxes and now it’s being reduced to 10, and you have to take public transportation just drop your ballot off, that you’re included in that conversation. The civil protections that we take for granted and that we have come to expect as people with disabilities, all of those things are easily taken away, and that is a little bit scary to me. It’s more than a little bit scary, it’s very scary.

Ashley Inkumsah:

Mm-hmm (affirmative). Yeah. I think a lot about it. I’ve been thinking a lot about the work. I think just last week, it’s been a year since John Lewis’s death, and CT Vivian as well. And I think about how the life that we live has been built on the work that they’ve done-

Damian Gregory:

Yeah.

Ashley Inkumsah:

… and how relentless they were.

Damian Gregory:

And we take it for granted.

Ashley Inkumsah:

We do. It’s easy because we were born into it as millennials. I’m speaking from the perspective of a millennial, we were born into it. We didn’t have to fight for it the way that they did. So, yeah. It’s easy to take it for granted.

Damian Gregory:

And it’s the same principle as what I’m saying about the ADA. I mean, when the law is there, whether it’s implemented to its highest degree or fullest degree, or not, when the law is there, you kind of think that it’ll always be there. Well, it doesn’t always have to be there because there are always people that have reasons why this part of the law or that part of the law isn’t to their liking, whether it’s people that have business interests that say, “Oh, it takes too long to get businesses passed and it’s hurting businesses to have to have all these accessibility features.” Or whether it’s polling places that are not accessible that say, “Look, why do we need so many accessible places, because there aren’t that many people who vote historically.” All of those things are easy to take away. And I am a double minority. So I’m a person of color, and I’m a person with a disability. And there’s a lot of things that could be said about intersectionality and all of that which I won’t get into at this point.

Damian Gregory:

But what I will say is that there are so many parallels between the Black experience and the disabled experience. And one of the wonderful things about the movie, Crip Camp that resonated a lot with me was the whole sit-in thing where said, “Oh, they formed coalitions with different groups and the Black panthers were involved.” Et-cetera. I don’t know if you’ve seen Crip Camp, but-

Ashley Inkumsah:

Yes. I have.

Damian Gregory:

… if you haven’t, I recommend it highly.

Ashley Inkumsah:

It’s an amazing movie.

Damian Gregory:

Yeah. And it’s wonderful because, A, so much of my disability history is not taught. I mean, when people talk now about critical race theory and conservative media loves to use those buzz words, it’s kind of interesting to me because if the Black experience is not taught, the disabled experience is totally not.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And it’s weird because we are such an important part of the fabric of what makes our society function. I mean, I watched as my family has aged, and disability when you mention it in my family, typically what would come across everybody’s view was, oh, it must be Damian and Eric, that’s what disability meant. Well as people of age, what we’ve seen is disability in some way affects everybody, because my parents are boomers. My mother uses a walker sometimes because of orthopedic back issues.

Damian Gregory:

My father in the last few years has developed Parkinson’s disease. And I have other relatives that have developed other maladies that have come with age, and what that shows is that disability may be one idea when you’re in your 20, but when you’re in your 50, 60, 70, it’s a totally different construct. And so I’m fascinated by so much of how we all need to realize that disability, like I said before, is just such a natural part of life. And we need to not fear it and we need to just embrace it and realize that ultimately, we are all just trying to have an experience. Right? We’re all at the end of the day just want to have a good life, a happy life, have people that love us and care about us and feel like we’re valued and respected in our spaces.

Ashley Inkumsah:

Mm-hmm (affirmative). And how can we as a society move forward and create an inaccessible society that includes people with disabilities? And what are non-disabled people’s role in that fight? Would you say.

Damian Gregory:

Well, there’s a lot of talk in all different communities about the importance of having allies. And allies are super important, because allies normalize the experience. I’ll tell you a brief story. When I was in college, my senior year of college, I interned at the ABC affiliate here in Miami, because I was a broadcast journalism major. And I decided that unlike all the other college students, I really didn’t want to go out with the reporters, I wanted to more write and produce. Because of my physical limitations, it was just not doable at the time for me to go into the news truck and edit the packages with the reporters, et-cetera. And what I did was, during my internship I would produce a newscast. Well, one day the executive producer of one of the shows said to me, “Get a notebook out of the filing cabinet and go log this tape.” Which meant basically writing down sound for the tapes.

Ashley Inkumsah:

Mm-hmm (affirmative).

Damian Gregory:

And it was a simple assignment but I wrote back to the news desk and they said, “Why do you look like so bothered?” And I said, “Because I can’t reach the notebooks.”

Ashley Inkumsah:

Hmm.

Damian Gregory:

And that’s a really simple thing, but when you are in an environment where everybody’s hustle bustle and A, you don’t want your disability to show up and B, a barrier. Now in my 40s, I would just say, “Hey, could you grab that notebook for me?” And I wouldn’t let it bother me. But at the time, in my early 20s, it was a big deal. So he went and he got the notebooks, and he went back and wrote a memo saying, we need to move the notebooks down from now on.

Ashley Inkumsah:

Hmm.

Damian Gregory:

And it was just a simple one night memo. It was no big deal to anybody, but it was a huge deal to me because what that meant was that person saw me and understood that it was a big deal that I couldn’t reach the notebooks. And that was acceptance. That was you’re part of my environment and I want you to be comfortable and I want you to be able to do your job. So that is a simple story of acceptance, and it’s been like 20 years since that happened, and I still remember because as simpler gesture as that was, it was a huge gesture to me. I think that the more we do that and the more people with disabilities are just seen as people with all kinds of desires, all kinds of dreams, whether that’s family dreams or vocation dreams whatever, I think that will go a long way towards creating the inclusion and diversity that we all want.

Damian Gregory:

Because at the end of the day, I’ve had many friends tell me that I’ve developed over the years, that when people talked about someday being accessible or not accessible, I understood what that meant on one level, but when it meant that you couldn’t come into this bar or you couldn’t sit at the bar with us, as your friends, as your colleagues, then I understood what it meant when you said, “This place is not accessible because it’s not an abstraction. ” It’s really mean that they like and really mean that they want to spend time with that is having that issue. And so it humanizes it in a way that, a squishy word like diversity and inclusion doesn’t seem to capture. Because ultimately it’s about the human experience. Right? So-

Ashley Inkumsah:

Mm-hmm (affirmative). Yeah.

Damian Gregory:

… did I answer your question?

Ashley Inkumsah:

Yes, you did. You answered my question very eloquently. We are all connected in our humanness.

Damian Gregory:

To me I’m hopeful that this era of everybody feeling empowered will be the rising tide that also lifts people with disabilities as well to become a part of the conversation. Because for so long we’ve been marginalized and paid lip service to. We all value lived experiences now, for most groups. We need to value the lived experiences of people with disabilities of all kinds, my deaf and hard of hearing brothers, my Autistic sisters, my brothers and sisters that are blind, my cousins that have physical disabilities, we’re all part of this beautiful mosaic that is America. But if nobody pays attention to us, we’ll never get our little piece of the pie.

Ashley Inkumsah:

Mm-hmm (affirmative). Yes.

Damian Gregory:

And we need to be not content to always settle for problems when we really need a loaf of bread.

Ashley Inkumsah:

Yeah. I totally agree with you. We’re definitely ready for a sea change, and 1.3 billion people, I think there are strength in numbers and it’s no time like the present for that disruption to happen.

Damian Gregory:

And the good thing is, if there’s any silver lining to this COVID situation, is that more people are becoming potentially disabled. And so what it’ll mean maybe it will open up folks that have never experienced disability to have their stories be told. And that can be a silver lining because when there are more numbers and more stories, hopefully there’ll be more representation because representation matters.

Ashley Inkumsah:

It’s been an amazing conversation, I really appreciated your time. So thank you so much.

Damian Gregory:

You asked me something and I did a huger service, and I just want to say one sentence, which is, we do the education for Nothing About Us Without us, but we also do consulting where we help people access services and all of that. And we also do advocacy, like making sure that the public policy that needs to happen, that we help people to understand how to do it on their own. So I teach self-advocacy classes. And sometimes it’s on a very basic level like, knowing your time limits, knowing how to tell a story, those kinds of things. Knowing who your public officials are, those little things. Going to a meeting and knowing, okay. Where do you go to that meeting? What do you want to come out of that one meeting with? Those little things that I wanted to mention that we do, because we do quite a bit.

Ashley Inkumsah:

Yeah.

Damian Gregory:

We do quiet a bit.

Ashley Inkumsah:

I’m sure it’s hard for you to keep up with all of the amazing things that you’re doing. You’re doing a great work, though.

Damian Gregory:

Thank you, and thank you for this opportunity and allow me to just kind of spout off.

Ashley Inkumsah:

Mm-hmm (affirmative). The pleasure’s all mine believe me, fire is all mine. And where can our audience keep up with you and all the amazing work that you’re doing and Nothing About Us Without Us.

Damian Gregory:

Our website is http://www.nothingaboutus.com, and were relatively new so we’re always open to doing new and exciting things. So feel free to drop us a line, if you have a problem, question, want to just talk, or need to make a connection with other people with disabilities, we’re here.

Ashley Inkumsah:

Mm-hmm (affirmative). Absolutely. Well, thank you again for being a guest. This was a wonderful conversation.

Damian Gregory:

Thank you.

[music]

Ashley Inkumsah:

I really and truly loved chatting with Damian. Such a brilliant individual and I really left our conversation with so much knowledge and insight about how we can use this past year and a half as a way to learn and to move forward, to create an equitable and accessible future. I mean, we are far from out of the woods with COVID, but he really outlined why we need to prioritize this ability inclusion to prevent worse outcomes. So thank you so much for listening to, watching or reading today’s episode. You can find transcripts and American sign language interpretations for each and every episode of What’s Up WID on our website at http://www.wid.org/what’s-up-WID, and as per usual we are closing out with our famous last words here on What’s Up WID. It’s a paraphrase one of our founders, Ed Roberts, we needed to get out there and change the old attitudes so we can build forward better. Thank you once again, and I’ll talk to you next time.

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What’s Up WID: Disability Representation in the Media Transcripts

(music)

Ashley Inkumsah:

Hello everyone, and welcome back to What’s Up WID, the World Institute on Disability’s podcast, where we discuss what’s up in the disability community with activists and advocates across the globe. If you’re new here, I’m your host Ashley Inkumsah. 

    Last week, I had an incredible conversation with the amazing Maryangel Garcia-Ramos. Maryangel is a Mexican disability activist who is the founder of the nonprofit Mexican Women With Disabilities, also known as Mujeres Mexicanas con Discapacidad. She represented Mexico at the United Nations convention on the rights of persons with disabilities in 2017. She’s really just an all around amazing, intelligent, trailblazer of a woman. 

    Maryangel and I spoke about disability representation in the media and really the lack of authentic, nuanced representation that we’ve become accustomed to. Today’s episode is definitely, without a doubt, one that I know that you’ll enjoy.

Ashley Inkumsah:

I’m so happy to have you as a guest today, to chat a little bit about disability representation in the media, a subject that I know that you’ve been super vocal about in the past. My first question for all of our guests is always, how are you, how are you feeling?

Maryangel Garcia-Ramos:

Well, thank you so much, Ashley, for having me on the show. I’m really excited to be able to speak about these really important issues that we see globally. It doesn’t matter where we are in the world, as persons with disabilities or activists for disability, we have basically the same, well, similar inputs, which are really interesting to see. 

    I’m doing great. We’re here in Mexico. I’m Mexican. I live in Mexico. It’s very hot, so it’s been really intense, all of these weather changes. A lot of work over here, but I think I’m in good spirits. Also, the stress, the overall world stress, is kind of reducing a little bit, with everything that has to do with the pandemic. Every day, there’s a little bit more a feeling of getting there, right?

Ashley Inkumsah:

Exactly. 

Maryangel Garcia-Ramos:

It’s very different for countries like the United States, or countries in development like mine or others. We’re still not there, but every day is a little bit more of hope. We see a little bit more of hope, so that’s good. I’m doing great. I’m happy to be here, so thank you. 

Ashley Inkumsah:

Well, I’m so happy to have you. I really am. So I know that a couple years ago, at a panel about women in television, where I know the president of Paramount and there were also executives from Warner Bros. who attended that panel as well, you called out those panelists for not including people with disabilities on their TV shows. I love so much that you did that. Why did you think, and why do you still think, that disability representation in TV, film, and in the media tends to be so lacking?

Maryangel Garcia-Ramos:

I think for a really long time, for a lot of years, we’ve been carrying this narrative, this really negative narrative around disability, for years, for example, and we don’t talk about it that much. Kind of like in our ableist systems, we just kind of accept it and normalize it.

    If we go back, a little bit of history. If we go back to maybe World War II, where Hitler, during the Holocaust, which is one of the most horrible moments in the history of mankind, when Hitler and his team killed a lot of people, especially Jewish people. There was a big genocide around people with disabilities. 145,000 disabled people were killed because they were not good enough. 

    There’s always this narrative around we’re these broken beings, not good enough. It comes to the fact that, when they talk about us, in government, in policy, there’s always been this negative narrative around us. Or this completely opposite, inspirational porn, we’re just here to inspire those who have all their abilities, and that’s all the use that we have in the world, that our existence is this kind of disastrous thing. 

    Since we have those narratives, it’s really hard to understand that … We have those narratives, and also we lack representation in different areas of society because of the ableist systems that we have. 

    For example, here in Mexico, people with disabilities, their average year that they can study is between sixth grade and seventh grade. 22% of people with disabilities in Mexico cannot read or write, for example. Most people with disabilities in Mexico or Latin America live in poverty. The system doesn’t allow us to be a part of that, because it’s not accessible, but also because we’re not part of the design and the decision-making on that, on companies or on government. It’s the vicious cycle, right? Which is first, the chicken, the hen-

Ashley Inkumsah:

The chicken or the egg. Right, exactly. 

Maryangel Garcia-Ramos:

It’s this vicious cycle. When it comes to content, this is the time that, for the very first time in a long time, in the history of mankind, we have access to creating our own content, telling our own stories. 

    The thing is, we haven’t been able to tell our own stories. When they’ve talked about us, we haven’t been part of that design or that conversation. They’ve told our stories without us. And when we see stories about people with disabilities told on TV, or told on movies, they’re portrayed by people who don’t have a disability. Which are amazing actors. That’s not the issue here. But it’s about claiming or clapping for people who don’t have disabilities, to act like someone who has a disability, seeing how amazing and admiring their life is, but in real life they don’t care about us. 

    It’s something that hasn’t been seen as sexy, or as something that could sell, or something that people could be interested in, because of these narratives. What I think, to this day, is that there is a lot of amazing stories that come from people with disabilities, especially women, and I would say non-binary people with disabilities. There are these amazing stories, regarding to women, that we haven’t told, who haven’t told their own stories. The little stories that we see around Netflix, they’re about men with disabilities, or white people with disabilities, mostly. 

    It’s about seeing that there’s this broad part of the population that we haven’t explored their stories. What the studios need is stories. They need new stories. They need to get to more people. They need to tell stories that we haven’t told before. It’s something that they haven’t realized, most of them. Also, their presentation, in not only acting, which is very important, but it’s about acting, it’s about writing the stories. Not necessarily stories with disabilities, but from the perspective of person with disabilities, for example. 

    We talk about media and news outlets, and the way they speak about us, it’s still very existentialist, very inspirational porn, talking still about all of these stereotypes that are told about us. When it comes to media, we don’t tell the really hard stories. We’re not telling that, in COVID, people of color, people with disabilities, they had it the worst when it come to COVID. We did not talk about this. In Latin America, in Mexico, we’re not even talking about how people with disabilities are not part of the people who should get the vaccines first. It never happened, and it’s still not happening. 

    Those are the things that, when it comes to injustices, we don’t even raise our hands on those stories. I think we need to be more present, and we need to keep on raising our voices, as part of the disabled community, to be able to tell those stories by our own perspectives. 

Ashley Inkumsah:

Absolutely, yeah. You touched on so many amazing things. The first thing is the idea of … Specifically, I don’t know if you’re familiar or you’ve heard about this story. I think it happened maybe last year. There is a, I believe she’s an Australian singer. Her name is Sia. She made this movie about autism. She said that she was going to cast an autistic child as the lead, but she said that she couldn’t because the set didn’t work for the child. So she ended up casting a non-disabled person. It’s just like, “Why are you not making the set accessible for someone who is autistic, versus …” I just don’t understand that. 

Maryangel Garcia-Ramos:

Why would you want to tell a story about someone who is autistic, without contemplating what it would require to tell a story about someone who is autistic? It doesn’t make any sense. 

Ashley Inkumsah:

Yeah. 

Maryangel Garcia-Ramos:

Yeah, it’s about that. It’s exactly that. It’s about we want to go and tell the stories about people with disabilities, which are very inspiring and it’s amazing and people should hear about this, but you don’t involve them in the process. Then why would you be telling this story? What’s the point?

Ashley Inkumsah:

They’re not involving them because maybe it’s uncomfortable for them. 

Maryangel Garcia-Ramos:

Of course. 

Ashley Inkumsah:

Instead of making the set comfortable for the person with disabilities, it’s just like, “Okay, we’re just not going to include them at all, then.”

Maryangel Garcia-Ramos:

Yeah, because it’s more complicated. Actually, she said it that way. “It’s uncomfortable. It’s more complicated.” Since it was more complicated, that’s why I decided to just cast this girl.” Also, her performance … Again, there’s nothing against actors without disabilities. Maddie, she’s an amazing dancer, and she was in her videos and everything. But the portrayal of the person, seeing the perspective of people with autism, seeing the portrayal of what they saw in the movie, they were like, “Did they even consult with people who are part of this spectrum, the experiences and everything around that?” 

    It’s not necessarily total fault on her performance, but it’s about the whole system around that. From the moment they say yes to the movie, from the moment it’s who is being … Not a gatekeeper per se, but who is actually making sure that this is something that represents what they want to represent? 

    Also, because the narrative was she wanted to tell the story about these people. What she wanted was, her main audience or target, was who? People without disabilities? Or was it people with disabilities? If it was, then it makes no sense. Wouldn’t you want the project to be successful? Of course you would. It just makes no sense, and it happens a lot. We see it a lot in everything, right?

Ashley Inkumsah:

Absolutely, yeah. I don’t think right now there’s a single television show, a single show on television where there is an actual actor with disabilities who’s playing a person with disabilities. Not that I’m aware of. Not in the mainstream, anyways, currently. 

Maryangel Garcia-Ramos:

I’ve seen it, but I think it was a show … I’m not sure if it got canceled. It was called Speechless. It was this guy who couldn’t speak, he had a physical disability. The mom on the show was Minnie Driver. It was an amazing story, and he actually couldn’t speak. He was in an electrical chair, et cetera. 

    Other shows like Special, he has autism, but the actor actually doesn’t. There’s another one on Netflix, that it’s called … No, it wasn’t Special. I’m sorry, I’m mixing it. Special is the one about a guy who has cerebral palsy who’s also gay. That story, but it’s one of the first stories that’s written about his experience, as being a gay guy and also having cerebral palsy and his experiences through that. It’s funny, but it’s the only one. 

    There’s a study that they did in the United States about content. I don’t have the number in my hand right now, but it’s I believe a super tiny percentage of people with disabilities are involved in the writing, in the production. Right?

Ashley Inkumsah:

Yep. That was my next point, that people with disabilities need to be involved not only as actors but in the writing, in the production, directing, as consultants. That is so, so important, all facets of the content being created, for sure. 

Maryangel Garcia-Ramos:

Yeah, making sure that nothing about us is without us from the United Nations about disabilities. It happens, of course. They cannot tell us a story about us without us. It makes no sense. Because what will happen? What Sia did, that’s what will happen. It’s not that … It wasn’t coming from a bad place. It’s just that it doesn’t work. It doesn’t portray the reality of it, which was the initial goal. If you wanted to say, “I’m going to portray something that’s not real and it has nothing to do, but it’s something super artistic and weird.” People would be like, “okay.” But if the narrative was, “I want to portray the reality of how they live and the experience …” Then it doesn’t. 

    It has to do with the decision-making from the very first place. The studio, someone who says yes, who’s the gatekeeper to say, “This show goes. We’re going to invest in the show. We’re going to spend our money on this show.” And then fail? Nobody wants that. Everybody wants the return on the investment, because it’s a business in the end. How do you make sure that this actually works, that it actually gets the broader audience’s understanding. 

    At the same time, they’re very responsible for this transformation of the negative narrative around disability. In Mexico, we have it, and we see it a lot in telenovelas. If you’ve ever seen a telenovela in Mexico or Latin America, telenovelas are these really big pop culture icons in our lives. Every time, they still talk about disability, it would be a drama if we saw it in the US, but in Mexico, it goes like, “Eh.” You know? 

    The other day, like four months ago, still in the midst of the pandemic, there was this seen on a telenovela, at night, primetime. This guy, he’s a very big villain, super big villain. He did the most horrible things to his family and everybody, the worst thing you’ve ever seen, super dramatic. At the end, the ending is that he has an accident and he’s not able to walk. He’s not able to walk or move his arms, can barely speak. He’s in a wheelchair, and he’s in jail. Then somebody says something around, “He got what he deserved.” 

Ashley Inkumsah:

Wow. 

Maryangel Garcia-Ramos:

We saw this on the main schedule, where everybody … It’s still a thing. A lot of people still watch TV, cable TV or open TV, and they see telenovelas. It’s a big thing here. I actually taped that, and I said, “So what you’re telling me is that the worst thing that could happen, to the worst person that you’ve known on this story, what’s the worst thing that could happen? It’s not jail. It’s not paying for his crimes. No. It’s being disabled. It’s not being able to walk. So what you’re telling me is that people who already have those disabilities, it’s like it’s a curse. You deserved it. It’s the worst thing that could happen to you.”

    If we still keep pushing those narratives … I asked, and we touched base with the studios that produced it. We were like, “So clearly there was no one, when they were writing this, who was like, ‘Excuse me. Is this okay?'” Because there was no presentation around that. It doesn’t necessarily have to be. It would be amazing if there would be more people with disabilities as consultants, because there is talent. They can consult not only on disability issues but on other issues, from their very own unique perspective. It’s not the same as what a deaf person will tell you, than someone who has a physical disability, or someone who has a physical disability that is part of the Black community, or people of color, or part of the Indigenous community, big Indigenous communities that are here in Mexico. You never know. 

    I think it’s more of a, ‘How is it that they don’t understand, to this day, that there are some things that, in the decision-making sessions, that they’re sitting there, someone would raise their hand, voice, and said, ‘Um, I think this is not okay?'” 30 years ago because we didn’t know this and we didn’t question much, but to this day? 2020? No. We cannot say that. No. 

    Yeah, he could be in a wheelchair on the story. Yeah, it could. But the narrative around that, saying he got what he deserved, these are the things that keep happening. It’s so normalizing our ableist systems and our ableist narratives that we don’t see, unless you’re part of the disability community, probably. Because then people won’t see it, and we need to keep pushing this. 

Ashley Inkumsah:

Yep, exactly. I think there’s a lot of people who would make the argument and say, ‘Oh, it’s just a TV show. What’s the big deal?” It is a big deal because the media has such a profound effect the way that we view the world, nature versus nurture, right? The way that we see things on TV and films, the music that we listen to, it really affects our perceptions, especially if you don’t belong to that group. Like you said, if that’s not your lived experience of having a disability, then of course that’s going to be your perception, that he got what he deserved. It’s terrible. 

Maryangel Garcia-Ramos:

Completely. I don’t think content is innocent, at all. The other day somebody was telling me on Twitter … Twitter can be a really dark place. They were telling me, “How is it that people now complain about everything? We cannot say anything, because everybody would get offended by everything.” Over here, they call it the crystal dinner.

Ashley Inkumsah:

Here there’s cancel culture. 

Maryangel Garcia-Ramos:

Exactly. Yeah, it develops into that. 

Ashley Inkumsah:

It’s the buzzword. 

Maryangel Garcia-Ramos:

Everybody can get canceled for something they said 30 years ago. We’re all deconstructing ourselves, and we’re not the same person that we were 30 years ago. Which is true. I understand that. But they were saying, “We cannot say anything.” Inclusive language over here, which is a very big deal because in Spanish we don’t have neutral language like it is in English. We have it as masculine or feminine. We don’t have a neutral. So it’s been a very big discussion around Spanish, around the world. 

    So all these things. People complain a lot about that. They were telling me, “It’s so hard. It’s so hard. We cannot say anything. All the time I’m tip-toeing on everything because we cannot … There’s nothing I say that it’s not going to offend someone. I think we’re very weak now, and we used to be stronger and more resilient back then.” 

    I kept thinking. In my own perspective, yeah, sometimes people complain about things that I’m like, “Really? Also, yes. But at the same time, I understand.” To me, it’s not that we were more resilient back then and now we’re not. The thing is, now we have more access to content. You were talking about content. That’s why. Because this is the very first time we have access to content, seeing it, creating it, talking about it, that we didn’t have back when we didn’t have … Not only internet, but these platforms that allow you do so.

Ashley Inkumsah:

Social media. 

Maryangel Garcia-Ramos:

Twitter, whatever you want, right?

Ashley Inkumsah:

Yep. 

Maryangel Garcia-Ramos:

To me, it’s just like, “No, I think people are questioning themselves more than we used to in the past.” Our parents, for example, the generation of our parents, obviously it depends on culture as well, they didn’t question their … My grandma for example. My mom would never question my grandma. “This is what you do.” “Yes, Mom. This is what I will do.” Because that’s how they were told. And machismo, or everything that has to do with gender, and gender roles, we didn’t question those things. 

    A lot of people came, paving the way for us today, in the disabled community, in the LGBT community, to help us question a lot of things. This is a moment where we’re questioning things. I don’t think we’re weaker. I think this time we have access to different perspectives, to make our own perspective. 

    It can be very dangerous as well, because you understand and you deconstruct yourself, and we can be better than we were 30 years ago, when we used to call someone a name or a particular word. To this day, you’re like, “Okay, I learned from it.” That’s why cancel culture is very dangerous, because we’re all evolving. That’s where it comes from. 

    At the same time, it’s about understanding that, with that as well, we are opening the gate, of course, to more speeches that come from hate, or from racism, or ableism, because of the access we have to information. It could be fake information, as well. I think it’s something that we need to generalize more. We tend to be very … For example, people are sharing articles that they don’t read, just because they look a certain way. Now Twitter has to tell us, “Do you want to read it first?” You’ll be like, “Yeah, it’s obvious.” But no, it’s not obvious for many people. “Are you sure you want to share this? Just read it first.” 

    I don’t think content is innocent. I think we’re very exposed to a lot of opinions, from podcasts, from everywhere you look there’s information. You get on Twitter, you’re going to be like … There are really good days, and there could be very dark moments, where you’re like, “Why is everyone complaining? Why is everyone so mad? Why is this so dense?” It’s understanding. It’s understanding that we’re all vulnerable to this. Like you said, there is a big responsibility in content and in media, and the way that we tell stories. Right?

Ashley Inkumsah:

Absolutely, yeah. I think, on the subject of this cancel culture debate, society is progressing and that’s a good thing. It’s a good thing that we’re getting to a point where we’re calling out racism and ableism, homophobia, transphobia. It’s a good thing. I think we need to embrace that, instead of wanting to go back to the past. You can’t turn the page without reading the page, you know? 

Maryangel Garcia-Ramos:

Absolutely. 

Ashley Inkumsah:

That’s really important, absolutely. Yeah. You touched on this already, the idea that there’s so many stereotypes that we see, when we see disabled characters in media. Whether they’re inspirational or they’re villains or they’re succeeding despite their disabilities. Why is it so important that we see accurate, nuanced displays of disability in Hollywood or in the media?

Maryangel Garcia-Ramos:

You know what I think? I think sometimes when we talk about diversity and inclusion, we talk about boxes. We talk about disability. We talk about LGBT. We talk about women. We talk about Black people. Whatever that means, because in the end it’s like, “There is no one single story about anyone in these particular boxes.” I think it’s important to understand that there is no one single story about disability. There’s a lot of different stories and a lot of different perspectives, and it’s important to tell it how it is. 

    It will be people with disabilities that are really proud of their disability. They will be proud of the community that’s around it. They don’t even consider, for example, being deaf a disability. It’s part of a culture, for example. There’s some deaf people who consider it that way, and it’s valid. It’s a very valid story, and it’s a very valid perspective. But if there’s someone who’s not okay with their disability and one day they want to walk again, or they want to see again, it’s a process, a very particular process, that they’re living through because of the ableist systems that they are, but it’s still a valid story. 

    So I think it’s very imp;ortant to make these stories come from the people who are living it. That way, I think it would be easier to define what is a story and what is a stereotype. Stereotype stories are mostly designed or created to create a feeling. I want to create a feeling, so that you … We’re usually used as props. We’re always the sidekick. We’re never the protagonists of our own stories. 

    These are the very first times that we’ve been seeing disabled women on the covers of beauty magazines. We were never considered beautiful. A lot of issues that we’ve never been considered beautiful because we’re these broken beings, right? Since I can’t walk, since I can’t see, since I cannot hear, I would not deserve to be called beautiful. I would not deserve to be called powerful. I would not deserve to … The first time that we’re seeing this, it’s just like, “Okay, this is a story. It’s not all of the stories, but it’s a story.” It’s important to see ourselves. 

    When I was young, I wish that I could have seen a Barbie in a wheelchair. Now I’m seeing it, but I’m older. I’m like, “Amazing. This is amazing. We can be whatever we want to be, not despite our disability but with our disability.” 

Ashley Inkumsah:

Absolutely. 

Maryangel Garcia-Ramos:

If we keep on talking about this narratives that say you don’t let your disability define you, or somebody told me that one day, “It’s amazing that you don’t let your disability define you.” I get where they’re coming from. They’re trying to tell you, “You don’t let the limitations of the world or your own ableist systems stop you from doing what you want to do in the world.” I get it, and it’s a beautiful thought. But in the end, it’s a lie. Because disability does define, not my value, because I’m worth just the same as any other person, walking or not walking we all have the same world. It’s about human dignity and about our human rights. 

    It has nothing to do with my worth. It’s more of it would be a lie to say it doesn’t define me, because it does define the actions that I do every day. If I’m going to take a shower, it’s a different process. It will define the time that it takes, the way that I do it. If I’m going to travel, if I’m going to go and have a job interview, if I’m going to try and study, it will define my processes and the way I live. So erasing this history of disability, it’s erasing my culture. It’s erasing the culture that we have around disability, that we’ve been able to be. 

    The other day, also, somebody told me, “I’m amazed how disabled people are like the original hackers. They developed this amazing capabilities to hack the system that wasn’t built for them, which in the end becomes their competitive advantage.” I’m like, “Yeah, it’s true. We are the original hackers. We’re hacking the system every day, because it doesn’t work for us. It’s something to be proud of. Yeah.” But then I kept thinking, “Well, why? Why should I be hacking the system? Why shouldn’t the system just work for me?”

Ashley Inkumsah:

Exactly. 

Maryangel Garcia-Ramos:

Like everybody else. Well, almost everybody else. I could be a part of that. Yeah, it’s good that we developed these capabilities, but in the end, is this the best way to develop them? Why doesn’t it work that way for us, also? We understand that. So yeah, it’s about taking this inspirational porn-y, existentialist narrative around that, and start looking it as not one single story. There will be different stories. Someone who is deaf in Mexico and someone who is deaf in Chicago probably will tell you a different story, right? If they’re a man or a woman or a person or whatever, it will be probably a different story, even in the same communities. There’s a lot of amazing things to be told, that I think studios and decision-makers and storytellers, there’s an opportunity that they’re missing. If they use a broad spectrum of stories, business will come out of that. 

Ashley Inkumsah:

Yep. The disability community is definitely not a monolith. There is so many rich stories to be told. That statement that you said that someone told you, the idea that your disability doesn’t define you, that reminds me of when people say, “I don’t see color.” You know, that statement. That’s exactly what that made me think of. The idea that we can’t exist as people of color, we can’t exist, we live in a racialized society, we live in an ableist society, so we can’t exist in this society without every day knowing that we are people of color, that you are disabled. You know what I’m saying?

Maryangel Garcia-Ramos:

Yeah. 

Ashley Inkumsah:

So the idea that your disability doesn’t define you, or your color doesn’t define you, it very much does because of the systems that we exist in, whether we like it or not. 

Maryangel Garcia-Ramos:

Definitely, it does. In order to erase your history, your culture, why would you erase that? You understand where they’re coming from. They’re like, “I’m trying to tell you that I’m not racist.” 

Ashley Inkumsah:

They mean well, but at the end-

Maryangel Garcia-Ramos:

Exactly. You’re like, “Yeah, but.” Even just saying it, it does have a tint of racism that you don’t understand, that’s internalized as well. 

Ashley Inkumsah:

Absolutely. 

Maryangel Garcia-Ramos:

So it’s very important to … Yes, definitely. Obviously I’ve heard other activists saying that it’s very tiring to educate everyone. It’s very tiring. Why should I get that role? I just want to live. I don’t want to keep on educating. I understand if people don’t want to do it, because you have the right to say, “I’m sick of trying to educate every white person around us. I’m sick of trying to educate.” I get it. In the end, it can be very tiring of course, but I think we need to continue. I think we need to be a little bit more understanding of the collective power that we have as disabled people. 

    I think there is a big area of opportunity there, with us and the world. I see it in Mexico and I see it in other places, of us uniting as a collective force. Because we are a very important political power, and we’re not seen that way. We’re one-fourth of the population in the world, so don’t tell me that we’re … If we’re called a minority, we’re huge. 

Ashley Inkumsah:

1.3 billion are disabled, globally. 

Maryangel Garcia-Ramos:

When you go to a bank and do a line, put them in line. Put us in a line and see if we’re a little. There is a lot of them, a lot of us. We need to understand the power that we have. Sometimes I think we don’t because of the ableist system that keeps us in the lower … “Don’t rise. Stay there.” 

Ashley Inkumsah:

Exactly. 

Maryangel Garcia-Ramos:

We have a big power, if we do it collectively. It’s not like we have to go and educate every single person. I get it. I get if someone is just like, “I’m sick of this.” But we need to be together, to make our statements and keep on pushing what we need to push. Especially with a very intersectional perspective. To me, that’s key to understanding our different powers within a community. 

Ashley Inkumsah:

WID is currently seeking people with disabilities to evaluate the accessibility of products and services offered by various companies. During our sessions, participants are given a list of tasks and asked to provide feedback as they attempt to complete them. WID offers both virtual and in-person sessions, and you will be paid for your time. If you’re ready to help make products and services accessible to people with disabilities, here’s your opportunity to make that happen. Fill out an application to become a user tester today, by visiting our website at http://www.wid.org/user-testing-application. 

    I want to discuss your personal experiences, as a Mexican woman with a disability. Can you speak about, both culturally and socially, what your experiences were growing up and what they still are now?

Maryangel Garcia-Ramos:

Thank you Ashley. In my case, I wasn’t born with a disability. When I was 13, I didn’t have an accident or anything, just my back started to hurt. I was a dancer and I did a lot of sports. My back started to hurt, and then one day it was hurting so bad. What happened was, in my case, I had a neurological thing around my spine and whatever. It ended up with an operation, and it ended up with me becoming a person with a disability, in a wheelchair, without me being able to move my legs. 

    Then I continue to experience the world now, from the vision of having a disability. To me, I’ve always said it, in the first place, obviously being a woman, a Mexican woman, a Latina in Mexico and having a physical disability, we are, I am in a place of we’re the most intersectional discriminated group in Mexico, women with disabilities. Women with disabilities in the world, we’re like 10 times more likely to live sexual violence and gender-based violence. It’s a difficult place to be. 

    But I’ve always said, and I speak from my privilege, in the end I’ve never been a rich person or anything, but from the privilege that I have, I’ve had the opportunity to study, to have a master’s degree, to have light, running water, and food every day in my home. Which is basically not the average person with a disability in Mexico. I’ve understood that. I’ve understood the responsibility that comes from that. 

    For a long time, I felt, with my friends, I was the only one with a disability. Then when I kept on meeting other people and meeting other groups, that’s when I saw the importance of making tribes and understanding other experiences with disabilities, and other women with disabilities. 

    My work has been, right now I lead the Diversity and Inclusion office for Tecnológico de Monterrey, which is the biggest private university in Mexico and Latin America. It’s huge. It’s really huge. At the same time, I’ve been an activist and a consultant and speaker around these issues. 

    I’m also the founder of the Mexican Women With Disabilities organization. We decided to do that four years ago because I understood the power of, yes, we need to talk about disability. Of course. We need to be a strong force and always bring disabilities issues to the table. But we need to talk about gender and disability and that intersection, especially when it comes to women. Nobody was talking about it. 

    I understood the privilege that I had, being able to be in different platforms like the United States, and the work that I have to this day, the places that I’ve been able to raise my voice and be and talk. Even me speaking English, it’s a privilege, speaking two or three languages, coming from this country.  Obviously speaking English has opened doors. Right now I’m talking to you, right? It has opened doors that a lot of people don’t have that. 

    To me, it was like, “Well, we need to find ourselves, as women with disabilities. We need to talk about the issues that nobody is talking about. Violence. If we want to talk about menstrual health, we want to talk about sex.” Nobody talks about that to us. We don’t talk about sex and reproductive rights, because of machismo and patriarchy and all these systems. At the same time, ableist systems that we don’t even see a woman with disabilities would want to … We don’t even talk about it. It’s not even on the table, right? 

    When we talk about our ability to decide, for example in the case talking about Britney Spears right now, which has been publicized because she is Britney. I love her. She’s been my queen since forever. But there’s a lot of people that have been going through the same things, with their legal capacity and with their rights and their reproductive rights, but we’re not talking about it when it comes to women with disabilities. 

Ashley Inkumsah:

Because they’re not celebrities. As much as I … Again, me too. Britney Spears, growing up, she was my queen as well. 

Maryangel Garcia-Ramos:

Yeah. 

Ashley Inkumsah:

But I feel that this movement, I worry that it’s less about disability justice and more just about fandom. I don’t necessarily see that same energy being directed towards people who are marginalized, people who are poor and have disabilities. I don’t see that. That’s my concern with it. 

Maryangel Garcia-Ramos:

Completely. Completely. Obviously it opens the door for conversation, which I think is amazing. Because it’s happening, because it’s her. Even her, with all the privilege that she’s had, she’s living this. It helps us to ignite conversations around, “Well, what happens when you’re not Britney? What happens when you’re not white? What happens when you’re …” 

    We need to keep on talking about gender and disability. It’s something that, in my experience, the way I’ve grown into your own self-love and my own perspective and maturity and understanding, and deconstructing all of these thoughts that you have and the way you learn, to me it was by being next to other women with disabilities and their experiences, with their own stories. 

    That’s what I’ve been doing, to this day. We’ve been pushing the issue. We raise our voices through reports that we give to the UN. At the same time we create content, we create platforms. We create these tribes in different states in Mexico, to see, “Okay, where are these women with disabilities? Okay, we talk about them a lot, but where are they? Can they all put their words in a Facebook group and talk about it? Where are they, and where are, especially, the most marginalized women with disabilities in this country?” Especially Afro Mexican women with disabilities, especially Indigenous or originary groups in Mexico who have a disability. Where are our trans women with disabilities? Where are they? We need to speak to them. We need to listen to them. We need to create these tribes and find ourselves. 

    To me, it has been a process around understanding that, and being able to listen. I think it’s one of the most important things, is to listen. We will always talk from our experience. We will always talk about what we learn. But if we have even the slightest tiny privilege or decision-making, even the slightest, tiniest, we can open doors for a lot of people who haven’t. Not because it’s our responsibility, but in my case because I chose to do so. The moment that I say that’s it, that’s it. 

    It’s been amazing to understand the collectiveness, the collective, same feeling, collectively, that we all live, and the things that intersect us. It’s been a long journey. To me, I’ve been having a disability for around 21 years of my life now and experiencing the world that way. 

    Also, listening to women from other parts of the world. Even in the feminist movement, sometimes we are the forgotten sisters. When we talk about diversity, the last thing that we talk about is disabilities. We never make sure that everything is accessible, our videos, our meetings. I’ve seen some feminists that criticize women in general, for not putting their bodies on the line, marching, because we need that, to put your body right there. I told them, “A lot of women with disabilities can’t put their bodies there.” It’s important to understand that it doesn’t make us less feminist, or it doesn’t make us less interested in the subject. It’s just that we have got to understand that us women with disabilities, we’re also women. It’s important.

    Also, opening the door to everybody that’s part of the trans community or are non-binary. Because in the end they’re in limbo, right? We need to also listen to those stories and the particular experiences that they live and how we link them to our feminist movements, or how we link them to our gender equality movements, as well, within the vision of disability. 

    To me, that’s very important, and it’s something that I will keep pushing as long as I decide to. I think it’s something that we need to raise more our voices and be more vocal about it. Not literally, but yeah. 

Ashley Inkumsah:

Absolutely, I agree with you one hundred percent. I love the work that you’re doing with your organization, Mexican Women With Disabilities. I love that you are pushing for every state in Mexico to have disabled women as leaders. I feel like definitely, as women, we’re brought up to … Although society is progressing, like we talked about, but we’re definitely as women globally brought up to not want to seek leadership. I just love the fact that you are trying to have women aspire to those roles. If you can tell us more about the work that you’re doing to cultivate disabled women leaders in Mexico, I would love to hear more about it. 

Maryangel Garcia-Ramos:

Thank you. Mexican Women With Disabilities, we’re a nonprofit organization. We’re all volunteers, basically. We’re not sustainable yet. What we do is three things. The first one is creating tribes and creating networks of women with disabilities. Through our Facebook groups, through different networks, so that we can identify them in different states. 

    When we link to other organizations and have different workshops, or there’s opportunities to for them to be in a position of leadership, or even in political spaces, whatever spaces they are, not necessarily in government, we can download this information to them. We can push that information. We can identify them. We can just be together and talk about issues, and not feel alone in this world, all together. 

    The second thing that we do, we create content. Through our platforms, through our storytelling, we create content. We have a platform that we call Disability Talks. We talk about issues from the perspective of women with disabilities. It has been amazing because we’ve been able to talk about things that they weren’t talked about before, kind of content. It has been great. 

    Then the third one, we do everything that has to do with political incidents, political advocacy. We’ve been working closely with the senate to, for example, in the States, to change this law that is designed to prevent violence for women, but it didn’t include disability and it didn’t include interculturality. We were like, “Well, this law cannot pass. This bill cannot pass.” We were pushing that forward, as an organization. At the same time, we’re creating these different reports, that we’re collaborating with human rights here in Mexico, or the United Nations. We’re doing all that, those three pieces of work. 

    I think the most important one will always be the creating networks of women with disabilities. The moment we identify ourselves, we find ourselves, and we see our power, then that’s the way everything changes. They see us. They see us, and we open doors. 

    There’s a beautiful quote I’ve always loved since I was a little girl. I love Frida Kahlo. There’s something memorizing about her. 

Ashley Inkumsah:

Yes. 

Maryangel Garcia-Ramos:

We lived in Mexico City, and I’ve been to her home like three, four times. I love her. I identified with her eventually, after I had my disability, because of our broken spines and everything that she felt and how broken she felt, and it was amazing. 

    There was this one letter that she wrote one time. I’m not going to exactly say it that way, but it was something around a quote that she said. “There was this one time that I felt really lonely and really broken. I felt that’s the way I was going to feel forever, in my life. Then I stopped and I realized that, what if there’s someone in the world that feels as broken as me and feels so much like I do?” Then she says, “If you are reading this right now, that I’m writing, I have to tell you that you’re not the only one. You’re not alone. If you do feel as broken as me, then we’re together. You’re not alone, and we’re broken together.” 

    To me, it’s one of the most beautiful quotes I’ve read and I’ve seen. To me, it’s just like here’s this woman that I’ve never met in my life, I just admire her work so much, and her life, in every sense, in every single way, but how amazing it is to connect with another woman. Especially what you’re going through. Not only the negative parts, but also the beautiful parts of life, the beautiful parts of being part of a stable community. 

    To me it’s just like, the part of not feeling alone, the part of this world being so unequal and so unjust towards these discriminated groups we might be part of, historically discriminated, then how amazing it is to find yourself with someone, to see yourself in a little piece of someone else. To me, that has been powerful. The way that I work, and that I push towards, our activism, our advocacy, is understanding that, “Yeah, I will tell my story, I will tell my perspective, but I have all these historical people who opened the way and all my sisters behind me.” Not behind me, but beside me, right? That’s how I feel. 

    To me, that’s very important. That’s what helped me and has been helping me, and the way that I see it, with other women with disabilities in Mexico, to understand the power that we have, by ourselves but also collectively. 

Ashley Inkumsah:

I love that. I love it. I love all the work that you’re doing. It’s amazing. What advice would you give to other women with disabilities, especially women of color, who maybe are aspiring to attain leadership positions or a sense of community, but they’re experiencing sexism and ableism and are maybe feeling discouraged? What would you tell them? 

Maryangel Garcia-Ramos:

I would say, “Keep pushing.” Keep pushing, but not on your own. Do the work that you have to do on your own, but make sure that you have these tribes, that you’re part of this community. I think when we’re part of this collectiveness, it creates this political pressure on organizations, on governments. So we have to find ourselves, give us strength together, and say, “I’m here, but I’m also part of this community.” I think that changes everything. 

    Also I would say, “Keep telling your stories.” It doesn’t matter where. If you have 100 followers on Instagram, if you have four, or you’re telling your story to your family, to your friends. Or if you have a huge platform and you’re as big as Beyonce. I don’t know. Just keep telling your story, because I do believe storytelling changes the world. Especially when it comes to people who haven’t been able to tell our stories, especially women with disabilities who are of color. We know this. It’s something that has to keep on happening, because then it will happen, how we started this conversation, they will tell our stories without us. We will be invisible to a lot of groups. We need to keep on pushing. 

    Also, “We’re not alone.” We’re all in this together, as women, and as women with disabilities. We find ourselves. I think that’s so valuable. In this life, I don’t know if we will come back in some other kind of way or in another life, but in this one particularly, it’s amazing. To me, it has been amazing to find other women that inspire me because of who they are, because of how they’ve managed to live, to do life. Not because of their disabilities, precisely, but because of their essence, because of who they are. I think that’s key, as mentorship, for us to keep on pushing. 

Ashley Inkumsah:

What advice would you give to television, people who work in executive positions in television, in film, in the media, as to why they should include people with disabilities? What would you tell them?

Maryangel Garcia-Ramos:

I would say, first of all, listen. I think a good leader knows how to listen. If this is a business, then keep on listening, because there is a big business around the stories that have not been told and that you can tell. They would definitely be successful. 

    Also, it’s not about only social responsibility or because diversity and inclusion is the right thing to do. It’s the strategic thing to do. It’s the organic thing to do, because the world is diverse. As we said, we’re one-fourth of the population in the world. Why are you not telling these stories? There’s stories that could sell, and there’s stories that could reach the other people. Sometimes they tend to think that disabled stories will only touch disabled people. Or if we tell stories about Black people, they will only touch Black people, they’re only made for Black people. Not necessarily, right? And LGBT. They tend to think that. They’re these boxes. No. For us, in the user experience, with our diversity, no, it doesn’t. It touches a lot of people. 

    It’s imperative to tell these stories not only because of representation and it’s the right thing to do, but because it’s a big business opportunity and because it is an opportunity and a responsibility to transform the world and to teach the world new stories. That’s their role. That’s what they get paid for. That’s where their talents reside. Open it. Open that box that nobody wants to really open and they’re afraid of. And make us part of that process. 

Ashley Inkumsah:

Absolutely. 1.3 billion, that’s a pretty big number. That’s a pretty big audience to reach. Even if you’re not included in that 1.3 billion, disability intersects every single one of our lives. Maybe our family members, our friends. We all know someone and love someone who has a disability. I mean, it’s high time for sure, for people with disabilities to be included. One hundred percent, yeah. Well, thank you so, so much for sitting down with me and chatting today. I so enjoyed this conversation so much. Where can our audience keep up with you and all the amazing work that you’re doing?

Maryangel Garcia-Ramos:

Thank you, Ashley. This has been an amazing conversation. Yeah, let’s keep on talking. You can find Mujeres Mexicanas con Discapacidad, Mexican Women With Disabilities, you will find them on Instagram, on Twitter, and on Facebook. You can find me, Maryangel, in Twitter at maryangel_ and maryangel_grg at Instagram. 

Ashley Inkumsah:

Awesome. Well, thank you so, so much. I really enjoyed the conversation. I really did. 

Maryangel Garcia-Ramos:

Thank you so much. Yeah, let’s keep doing things together. 

Ashley Inkumsah:

For sure, for sure. (music).

    Yet another great conversation. Dare I say one of my favorites that I’ve had on this podcast. Although all of our guests have been absolutely exceptional, but Maryangel really honed in on the idea that people with disabilities deserve to have accurate, nuanced depictions of them on television, in film, and in the media overall. Movie and TV sets need to be accessible. They need to have people with disabilities in the writers room, behind the camera, directing, producing, everywhere decisions are being made. 

    She also gave some awesome advice to women with disabilities, and she’s doing some awesome, actionable, transformative work with her nonprofit, Mexican Women With Disabilities. Again, just a really all around trailblazer, such an important voice in the Latinx disability community, and really in the global disability community overall. What an amazing pleasure it was, to speak with her. 

    Thank you guys, though, so, so much of listening to, watching, or reading today’s episode. It’s time for those famous last words here on What’s Up WID. To paraphrase one of our founders, Ed Roberts, “We need to get out there and change the old attitudes so we can build forward, better.” I’ll talk to you next time. 

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What’s Up WID: Disability Inclusion Transcripts



>> Ashley Inkumsah: Hello everyone and welcome back to What’s Up WID, the World Institute on Disability, biweekly podcast, where we discuss what’s up in the disability community, across the globe. I’m your host Ashley Inkumsah and I’m so excited for you to hear or watch or read the conversation I had with the one and only Debra Ruh earlier this week.

Ashley Inkumsah: Debra has been a global disability inclusion strategist for the past 20 years. She’s a market influencer and internationally recognized keynote speaker. She’s an author, branding expert and an entrepreneur. She also happens to be a board officer on WID’s board of directors. She is the CEO and founder of Ruh Global Impact. She’s also the host of an online program called Human Potential at Work.

Ashley Inkumsah: Now, Debra and I had quite the fruitful conversation about why businesses, corporations and governments need to prioritize disability inclusion. As I always say, grab yourself your favorite snack. My personal go-to snack is brie and crackers, perhaps with a glass of wine, but grab yourself whatever your snack of choice may be and sit back and relax and enjoy my wonderful conversation with the fabulous Debra Ruh.

Ashley Inkumsah: Well first let me just say, I think you’re doing some absolutely amazing work in the realm of disability inclusion and I’m so, so excited to speak with you today. My first question for all of our guests is always, how are you doing? How are you feeling today?

>> Debra Ruh: Well, thank you so much for having me on this show, on this podcast. I’m very excited that WID has a podcast now. I’m doing fine. My husband is walking a very difficult path with dementia, and we often talk about people with disabilities and that we could age into disabilities. And he’s one of those individuals where that is happened. So it’s… The word of the day I think for many of us is, wow, it’s intense. So let’s be kind to each other and let us be the way forward for each other. So, but thank you for asking. But Ashley, how are you doing?

>> Ashley Inkumsah: Well, thank you for asking me. First, I want to respond to how you’re doing. I always say that disability is one thing that can happen to everyone. Sometimes it might be hard for other people to relate to other people’s plights, but disability is the one thing that literally intersects every facet of our livelihood. So I totally feel you and understand you on that. And I feel like there’s always that pressure to say that you’re doing great, but I’m glad that you are genuine with how you were really feeling. And I really appreciate you sharing that with me.

>> Debra Ruh: I think we have to be right now, Ashley, because what I know is everybody that I’m talking to is traumatized and it’s not going to let up anytime soon. So we just have to I think take the time to be a little bit kinder and nicer with each other.

>> Ashley Inkumsah: Absolutely. I think mental health… I think that this past year has very revelatory as it relates to our mental health and our mental hygiene, just taking care of ourselves and not feeling like we have to be strong all the time. It’s been challenging. So it’s okay to say it has been and be honest, I think that’s where the healing starts.

>> Debra Ruh: I agree. Well said, well said.

>> Ashley Inkumsah: Yeah. And as far as how I’m doing I think I’ve been doing pretty good. Again, as good as we can be given our circumstances, I think that things are looking up and things are getting better, but I have been saying that we want to build forward better. We don’t want to go back to what we had before as it relates to the disability community for sure. We want to learn from the past year and move forward. So that’s kind of the head space that I’ve been in.

>> Debra Ruh: Right. I agree. And even though it’s so hard, it’s so hard. I don’t want us to go back to what we were doing, killing people with darker skin than mine in the streets. So I would rather walk this intensity and try to get it better, right for more individuals than go back and see the… whatever the way it was. We can’t go back anyway. But I think we just have to be deliberate about changing the world so that people can be more included and we stop deciding that people are throw away because they have a darker color skin or they love the wrong person, or they have a disability. It’s ridiculous what we do about… how we treat people.

>> Ashley Inkumsah: Absolutely. I think we’re certainly… we’ve grown. We’re much better than we have been in past years, but we have a ways to go. Again, It’s been a revelatory past year and it really has revealed that yeah, we have a ways to go as it relates to inclusion for sure. And that’s a great segue to my first question which is, how would you define inclusion for someone who is completely unaware of what disability inclusion is? How would you define what disability inclusion is?

>> Debra Ruh: Well, that’s a great question. And what disability… I think often people don’t know what we’re talking about when we’re talking about disability inclusion. And I know with the work I’ve been doing for a long time, people try to get me in a box and I’m just not going to be in a box. I’m not a square peg in a round hole, or I definitely am a square peg in a round hole, I guess I should say.

Debra Ruh: But if you really want to include people with disabilities then you do that. You include the community, you make sure things are accessible. You make sure that you are focused on inclusive design. You make sure that you are employing people with disabilities. And if they’re not disclosing they have disabilities, you as a corporation, you should really ask yourself why. So you make it safe for people to be able to self identify and talk about who they are and their lived experiences. You make sure that you focus on the intersections because it’s great to talk about disability inclusion, but if you’re not talking about disability inclusion from the lens of the intersections, which you mentioned, black women with disabilities, LGBT members with disabilities, women with disabilities. Looking at all of the many, many, many intersections. What about refugees with disabilities?

Debra Ruh: So I think you have to understand how broad the topic is, and then make sure that you understand we’re also talking about the digital divide and digital inclusion, because if you don’t have access to the internet and I was struggling with that recently. And if you don’t have access to good technology. So I think when people say disability inclusion, sometimes they forget that there’s a lot of moving parts. And that’s why it’s so important to work with DPOs or disability persons organizations like WID.

>> Ashley Inkumsah: Right? Yeah. I absolutely agree with you. And I’m so glad you brought up the intersectionality. In all social justice movements, I feel like there is no movement without including… Like in the Black Lives Matter movement, there’s no movement without including black women or black trans individuals. In every single movement that there is, we really have to include people who are multiply marginalized within that movement. So I really am appreciative that you brought up those intersections, for sure.

>> Debra Ruh: Yes. And I’ll make one comment and I’m probably not going to get some my numbers correct. But I believe that I’ll be able to make the point. When you look at gender issues, which I’m also very interested in because people will say that women are the largest minority group in the world, which by the way is not true. Women are a majority, there are more women in the world than men, but we’re treated like a minority group. So that’s it. So, and I believe in getting behind supporting the Black Lives Matter intersections, all of this, because we’re stronger together. When you look at… if you just look at it from a gender issue and there are major issues, so a man, and looking at this from the United States, I do a lot of work globally, but so you just look at $1.

Debra Ruh: So if a man is making a dollar, then I, as a Caucasian white woman, I make about 70 cents on that dollar. Ooh, that’s bad. But when you start looking at my sisters in the other groups, my sisters, that… My black sisters. Well, they make like 50 cents on the dollar. And then you start looking and you just go down and it’s the Latinos with disabilities. But you start getting to women with disabilities and it’s ridiculous. On the average, it’s like 20 cents on the dollar. So as you move through our gender intersections, it gets worse for you if you… And I don’t even understand why we decided that somebody with lighter color skin is better than somebody with darker color skin. But as you said earlier on, there’s a lot of things we need to correct in society. And these are just a few, but if it’s looking at it from that gender, you can see the disparities get worse and worse and worse and worse.

>> Ashley Inkumsah: I think ableism and sexism and misogyny and racism, they’ve just had extremely robust marketing campaigns where it’s literally infected literally every facet of society, whether it’s implicit or explicit, it’s 100% infected every facet of our society.

>> Debra Ruh: Oh, well said. And it’s amazing sometimes now that we are actually digging into it, it just is amazing. I always knew there were problems with housing and problems with that. But I had no idea how bad it was for other people. I just had no idea. And one time Ashley, I have a large social media presence, and one day something was trending on Twitter and it was white privilege. And I thought, “Go in…. Don’t go in there Debora, don’t. And I thought, “No, I have to go in.” And so I looked stupid at comments that people were making, “Oh, what do I do with my white privileges? I got out of getting a ticket.” Okay. Whatever.

Debra Ruh: It’s some stupid comments, but I went in and I said, “Well, what I’m doing with my white privilege is I’m making sure the door is wide open and I’m bracing it open. And I’m saying, come on in, because we all have privilege being born in a developed country. That we all are privileged if you’re living in the United States, but what are you doing with that privilege to help others that aren’t privileged?” And that ,I think, that’s the opportunity that we all have.

>> Ashley Inkumsah: Yeah. That’s the age old question. What are we doing with our privilege? And I think allyship is really important, especially within the disability community. We need people who are non-disabled, who are allies, unfortunately, because people who are non-disabled… Our privilege that allyship to stand or roll or sit beside one another. For sure. Absolutely.

Debra Ruh: I agree. I agree.

>> Ashley Inkumsah: How, and when did you get involved in the disability inclusion space?

>> Debra Ruh: Great question. I believe that I got involved 34 years ago when my daughter was born with Down syndrome because I remember right after I gave birth to her, looking at her. And by the way, thinking that she was the most beautiful baby ever born, which I still agree with, but I had this quiet little thought flipped through my mind that said this, she looks like she has Down syndrome. And I remember thinking, what does that even mean? I had never met anybody with Down syndrome. I’d seen the kids going in the special classes, but I ignored that thought. And four months later the doctors diagnosed her with Down syndrome, but I believe that’s when I joined the community. What I didn’t know was I was already part of the community with my ADHD and anxiety. I just didn’t know anything about it.

Debra Ruh: I didn’t think at the time I’d met anybody with a disability, which so many people are like that. What I realized as I moved into the field, really aggressively into the field was I was surrounded by imperfect humans. And by the way, I wanted to be around imperfect humans because who’s perfect? Nobody’s perfect. And so, but I was in the banking industry and I was at an executive level in the banking industry. And I was trying to help, I was actually employing people with disabilities because we had programs to do that. But when my daughter reached middle school in, it would have been about 1998 or something like that. But I just was so surprised how there was no plans for her joining the workforce at all. And I thought, “But wait a minute, she can contribute.” So, that’s when I got very involved. That’s when I decided to quit my well-paid banking position and create access where I committed to employing people with disabilities.

Debra Ruh: I also did not… And we were a technology company focused on accessibility, but I didn’t want to be a, for a nonprofit. I wanted to prove I could be a for-profit and stand toe to toe with other people that weren’t employing people with disabilities. We now would call that a social enterprise. So I did that around 2000, but I would say that I joined the community in 1986 when my precious daughter was born.

>> Ashley Inkumsah: Amazing. It’s amazing how our lived experiences go on to color what we end up dedicating our lives to. That is wonderful.

>> Debra Ruh: I just always thought I was here for a reason. And so when my daughter was born, when they told me she had Down syndrome, I thought, “Okay, all right. I want to help.” And yeah. And then my son was born 15 months later and I realized, okay, I also have to navigate two children, but I think you’re right. Our lived experiences can help us navigate where we’re going.

>> Ashley Inkumsah: Absolutely. What kinds of challenges have you seen when it comes to corporations, working with corporations as they try to incorporate disability inclusion initiatives within their organizations?

>> Debra Ruh: Well, I would say that the problems have shifted, but early on, they just did not understand what we were talking about. So we spent a lot of time talking about the business of including people with disabilities, employees with disabilities. And so, but now what I see happening, and also we were seeing a lot, and this was happening mainly in the states, but we saw a lot of… I’m just going to focus on accessibility because I don’t want to get sued. And so I saw them and I don’t blame them. Sometimes when you look at a problem, you’ve got to see where your risks are and you’ve got to address that first.

Debra Ruh:n But I think what I continue to see is corporations just don’t understand the moving parts. They don’t understand that if you don’t make your systems accessible, that we can’t even apply for your jobs, they don’t understand what would you… When we’re talking about disabilities that about 80% of the disability population have invisible or hidden disabilities. And you don’t even know for sure if they’re a person with disability and they don’t know how to encourage us to self-disclose because I’m a person with hidden disabilities. I’m very vocal about it. I’m a person with ADHD and severe depression and anxiety, which this intensity right now is not helping, but oh well, but so the corporations don’t understand. They don’t understand the complexity of inclusion, of disability inclusion. And then also they’re confused because they’re having diversity and inclusion conversations in other ways like with our Black Lives Matter or with LGBT or women and gender, or Asian Americans, Latin Americans, but they don’t understand the intersections.

Debra Ruh: And often diversity groups don’t understand the intersections. Some of them are starting to, but I remember years ,this was about three, four years ago. So a long time ago, I was at a SHRM conference, the Society of Human Resource Management, which is really trying to help us. And there was a diversity and inclusion and they were saying, “So what is part of diversity inclusion?” And I just sat and I waited. I wanted to see how long we were going to go be before our community was included. And it got to 15 categories and still nobody had mentioned. And so I raised my hand and they’re like, ” Oh yeah, yeah.” But that’s what we see as we, the disability community is often not even being included in the diversity inclusion conversations.

>> Ashley Inkumsah: It’s so true. I feel like we are having more and more conversations about race and about gender disparities. But for some reason it feels like the disability conversation has been, I don’t know, somehow left on the sidelines and the social justice movement hasn’t caught up to it yet.

>> Debra Ruh: Yes. Agree, agree. And you know, I love the term social justice and that’s what we use as well. And you look at things like we’re talking about, you start digging into the problems and you’re just stunned. But if you look at our prison systems where we are totally warehousing a lot of brown and black people, but 65% of prison inmates have disabilities, why would we do that? First of all, why would we put people in jail because of the color of their skin, which that is happening, that is totally happening. But at the same time, how can we not have the empathy that these people are in trouble? And we’re going to jail them? Anyway, things like that.

Debra Ruh: I won’t get caught up in that drama. I don’t understand how we can say we’re a humane society and then do what we’re doing in the States and our prison systems. But yeah,

>> Ashley Inkumsah: A whole other can of worms for sure.

Debra Ruh: That’s right. That’s right. I’ll be careful to stay on track.

>> Ashley Inkumsah: So how have you helped corporations to overcome these challenges that they face?

>> Debra Ruh: Well, I’ve been working on helping corporations include people with disabilities since the early two thousands. And how I started helping was with accessibility. I really believe in accessibility, all technology needs to be accessible. The buildings need to be accessible. And then I started really focusing on this from a global perspective. It’s like, okay, but it’s great that you’re including people with disabilities in the United States or in the United Kingdom, or maybe in Australia, but you need to do it… corporation, in all of your geo footprint.

Debra Ruh: So why aren’t you doing in Bangladesh? Why aren’t you doing it in Poland? Why are… And so sometimes I feel like I’m just being the nag of the industry. I’m the mother nag going, “Come on, everybody’s got to be included. Come on.”

>> Ashley Inkumsah: We need the disruption.

>> Debra Ruh: We do need the disruption. But what I have done, which is relatively new over, it’s been about four months now, is I decided to create a global nonprofit called Billion Strong, very proud that WID of course, has joined this effort being a global advisor. But I… And I’m saying, I, and then I’m going to switch to we because you can’t do anything with an I, but I really wanted… I was seeing things like the Valuable 500 happening. 500 CEOs committing to include us. And I thought, “Well, wait a minute. If our community doesn’t come out and self identify in a way then they’re not going to be able to find us.”

Debra Ruh: So could we create an identity organization, once again, being very mindful and deliberate about including the intersections of those identity organizations, like the LGBTs, the Black Lives Matter and others, but also do it from a global perspective because solving it in the U.S. is great, but we’ve got to solve it in the world. And so I’ve been able to pull in so far 58 countries, hundreds of advisors, but at the same time I’m going to make another point. It’s also very, very important to be very deliberate right now, because as I said, Ashley, I am a person with disabilities but you wouldn’t know it by looking at me if you could see. Now, I’m also a mother that has a grown daughter that was born with Down syndrome. I’m also a wife that has a husband that has aged into dementia, which is sad, I’m so many different things, right?

Debra Ruh: But what I decided to do with this organization, we created Billion Strong, which is billion-strong.org was not be the CEO of the organization. Instead I selected, and with my team, we selected Dr. LaMondre Pough to be the CEO. And the reason why is because he has lived experiences as a black American. So he’s, African-American, he also has lived experience growing up in the south of the United States, which is the states that fought to not free the slaves and still there’s a lot of… there’s prejudices everywhere, but it’s a little bit worse I perceive sometimes in the part of the country that I was born. He also is a man with lived experiences with disabilities. He was born with muscular dystrophy and his mother was told to institutionalize him. His mother was told he wouldn’t live past five.

Debra Ruh: Well, he just celebrated his birthday. I think he’s 47. He’s got this-

>> Ashley Inkumsah: Sounds amazing.

>> Debra Ruh: Yes he’s an amazing leader too. He’s such an amazing leader, but he has not only lived experiences with disabilities. He’s a wheelchair user. He has limited use of his upper and lower body. But let me tell you what he is. He’s an amazing, talented man that is going to change the world. And all of us are going to get behind him and support him. But representation right now matters more than ever before. If you have a chance to hire somebody and you have three qualified candidates, and one of them is a black woman with disabilities, you should select the black woman with disabilities. Let’s just be more deliberate about including the disenfranchised people, because we’re not going to get past this if we’re not more deliberate about inclusion right now.

Debra Ruh: It’s not that I don’t want white people included, of course I do. But we’ve disenfranchised people of color too long. People that are brown and black, people with disabilities. Yeah. LGBT community. So it… right now, representation and intersections also matter. And I know you agree with that, Ashley.

>> Ashley Inkumsah: Yes, absolutely. I think we often get into this conversation about identity politics, this term about identity politics. And are you including this person because they’re, so-called qualified or not qualified, or just because of the identity that they are personalized or ascribed to. And I think it’s really important what you said that people of color, people with disabilities have historically not been given a platform, not been given opportunities to be employed, to have an education, to exist. And so many sectors of our country and really of our whole entire world. So, it’s really important to actively and intentionally want to include them in the conversation.

>> Debra Ruh: Yes, yes. And another thing that I saw happening, Ashley, which was bothering me, I love that the corporations are starting to employ people with disabilities. I love it. But I started noticing, especially during the pandemic, I had quite a few younger people, now I’m in my sixties, but younger people. So I started seeing a trend. I had about 15 different ones, all separate that… most of them were women. Most of them, except one had lived experience with disabilities. A lot of them were part of the intersectionalities. They all worked for major multinational corporations. But what they all were also saying was that they got hired, but then they sort of got stuck. They weren’t being promoted. They weren’t getting professional development and that feels a little bit like tokenism.

>> Ashley Inkumsah: Exactly.

>> Debra Ruh: So it’s like, “Hmm, did you hire me? Because…” Right? And so that’s another reason why we created Billion Strong. I mean, I still have Ruh Global Impact and we are a corporate. We help corporations all over the world, understand the nuances of this, but I really, really felt that we needed to have a global identity organization.

>> Ashley Inkumsah: Why do you think it is that disability inclusion tends to be so lacking in society and corporations and marketing endeavors of corporations? Why do you think that is?

>> Debra Ruh: Well, I think a lot of the reason is because the community itself has not identified. We don’t… I think we could learn so much from the LGBT community, for example, that they took all their different parts. They’re still doing it and come together. You know, I… we can learn a lot from the LGBT community. It’s really LGBTQIA plus because they’re figuring out their identity.

>> Debra Ruh: And they have been told by society and by religious doctrine that they’re broken and that they’re… But they came together with pride and we have not done that at the disability community level. We haven’t. I think we need to come together with pride and say, “I’m proud to be a Caucasian woman, a white woman with lived experiences with disabilities. I’m proud of my lived experience.” And we also need to say Ashley, that having a disability doesn’t make us broken. It actually can make us very sexy. So how can we change the dynamics? Because right now, when a child… when my daughter was born with Down syndrome, people didn’t congratulate me on having my beautiful baby girl. People were feeling sorry for me. So it’s not a tragedy to be… have a disability society is the one that makes it a tragedy.

>> Ashley Inkumsah: Absolutely. I was just saying on our last episode, how people with disabilities have to do so much to fit into a world that was not built for them when it should be the other way around. And it’s actually the same. And I’m really into the body acceptance movement and like anti diet culture movement. And it’s the same way that women, we, as women are often trying to fit ourselves into a size two dress, whereas designers should be making clothing that fits all of our different, beautiful bodies. You know? So it’s the same thing with the disability community.

>> Debra Ruh: And once again, it’s human beings telling to other human beings they’re not good enough. You’re not pretty enough. It’s ridiculous. We have got to stop discounting people. We have to stop it.

>> Ashley Inkumsah: Absolutely. We have to do better as a society, for sure. Why do you think that governments and corporations and society as a whole… why is it so important that that people with disabilities are included in their planning and overall business practices?

>> Debra Ruh: Well, in the first place, if you want to hire young people, period, you better do it because the younger generations are not going to put up with this anymore. The younger generations have out, we won’t work for you. Thank goodness for the younger generations.

>> Ashley Inkumsah: Absolutely, the Gen Z kids are really the… they are the best that there’s ever been. I’ve been saying I’m kind of jealous of that myself.

>> Debra Ruh: Whoa. And they’re saying, “We won’t work for you. We won’t buy from you. And if we are working for you, we will walk out on you if you are not including us.” And so if you want to be an employer of choice, you better be paying attention in hiring people with disabilities and other diverse groups. So some governments and corporations, they don’t realize society has changed. Some older generations don’t realize it, but it has.

Debra Ruh: And the younger people are not going to put up with it. So you want to be considered a leader, stop stealing our data, stop being inappropriate, stop making money. Everything that you’re focused on, make sure that you’re looking at… We want you to make money, but you also need to do social good. And you need to have a diverse workforce that includes people with disabilities and we are watching. And so I think the number one thing that’s going to change everything are the young people. They’re not going to put up with it anymore.

>> Ashley Inkumsah: Thank you. Thank you. Absolutely. Those Gen Z kids are going to give them a run for their money. That is for sure. And it’s amazing. I love to see it. What lessons would you say that you’ve learned along the way that you can share with other businesses and NGOs and corporations that might be still on the fence as to whether or not to include people with disabilities and disability inclusion as a whole?

>> Debra Ruh: Well, once again, you have no choice. You have to include people with disabilities. And by the way, if you don’t, we’re going to continue to talk about your brand and the community is going to… Once again, we’re getting together, like with Billion Strong. We already have strong leadership groups like WID and National Organization on Disability and the Valuable 500. But when you get this identity organization together and then others will join. If you don’t include us, we’re going to talk about it. So I mean, society is going to have to take a stand and we’re going to have to take a stand together, all of us together saying, “By the way, it is not okay that you’re not including brown and black. It’s not okay that you’re not including more LGBT. It is not okay you’re not including women in meaningful ways and it’s not okay.”

Debra Ruh: So the corporations, by the way, do know this is happening. And so did the governments, but they don’t completely know how to proceed. So I think we still have a lot of work to do to make sure they know. For example, something that WID does is they have a great program to help make sure that conferences are fully accessible. So you have to think about that. Yeah. There’s a lot of moving parts, but these corporations, these governments need to be deliberate about working with organizations like the World Institute on Disability because they represent our community and we’re paying attention. We’re paying… And there’s a lot of ways to mess up. But if you’re working with an organization like WID we’ll make sure or Billion Strong or all of us, because there’s so many different moving parts, we will protect you.

Debra Ruh: We’ll help you be successful with this. But if you’re not including us, you can expect the lawsuits to continue. You can expect us to be talking about your brand in negative ways in social media. I’m talking overall. Not me personally. I tried to be real nice with social media.

>> Ashley Inkumsah: Yes, absolutely. Well, like I said, it’s been an awesome, very fruitful conversation for sure. Where can our audience find you? Where can they keep up with all of the amazing work that you’re doing?

>> Debra Ruh: Thank you, Ashley. I’m very visible on social media. And most of my handles are my name, Debra Ruh, D-E-B-R-A R-U-H. I’m on Twitter and Instagram and Twitch and LinkedIn and YouTube. I’m on all of the channels, but also my website is http://www.ruhglobal.com. And that’s… we have a little think tank consulting group, and then Billion Strong is billion-strong.org. And we just started billion-strong.org so there’s not a lot of content on the website because we want the community to help us, but we are proud that WID is a partner of Billion Strong, and I think you’re a great interviewer too Ash. And I do want to bring that in here.

>> Ashley Inkumsah: Thank you. I appreciate it. Well, I actually have one more question actually. My last question for you is what is one piece of advice that you would give and offer to businesses? What’s one piece of advice you would offer as it relates to disability inclusion?

>> Debra Ruh: Well, I think the one piece of advice I would use is make sure that if you have employee resource groups, that you have one for people with disabilities, and if you have other groups see how you can pull those groups together to support each other and support you as a brand. And once again, understand society has changed. And those younger people that are so talented that you’re seeking, they don’t want to work for you if you’re not showing leadership in diversity and inclusion and accessibility. And if you don’t believe that, just go out on social media and they will tell you that. So I would think the one thing that I would recommend is to pay attention to what is happening in society, because it has changed and is going to continue to change.

>> Ashley Inkumsah: Absolutely. I couldn’t have said it any better.

>> Debra Ruh: I’m teaching the world Ashley.

>> Ashley Inkumsah: Yes you are.

>> Ashley Inkumsah: Well, like I said, I mean, this has been an amazing, awesome fruitful conversation. So much to think about, so much actionable things that we need to get out there in our community and really start to create and move the needle forward in disability inclusion for sure. So it’s been a pleasure. It really has been.

>> Debra Ruh: I feel the same way, Ashley, thank you so much.

>> Ashley Inkumsah: What an absolutely great conversation. I mean, I really just had so much fun chatting about why businesses and corporations and governments really need to commit to including employing and advocating for people with disabilities with Debra.

Ashley Inkumsah: It really was awesome to speak with someone who has the shared mission of operationalizing inclusion. Debra is truly so, so incredible. Thank you so, so much for tuning into today’s episode. You can find transcripts and American sign language interpretations for today’s episode and all of our past episodes on our website at http://www.wid.org/whats-up-wid. And as always, our famous last words here on What’s Up WID, to paraphrase one of our directors here, Nicholas Love, and one of our founders, Ed Roberts, we need to get out there and change the old attitudes so we can build forward better. Thank you so, so much once again, and I’ll talk to you next time.

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What’s Up WID: Institutionalization of People with Disabilities



>> Nicholas Love (Host):
Hello, everyone, and welcome to the debut episode of What’s Up WID, the World Institute on Disability’s biweekly podcast, where we’ll be discussing what’s up in the disability community across the globe. My name is Nicholas Love and I’m honored to be a director at WID and I will be your host for What’s Up WID. Our first guest is none other than WID CEO and executive director, Marcie Roth. Following the 9/11 terrorist attacks, Marcie worked to improve emergency preparation and disaster outcomes for people disabilities and build assessable disaster-resilient communities.

>> Nicholas Love (Host):
Marcie was then appointed by President Obama to the United States Department of Homeland Security, Federal Emergency Management Agency, also known as FEMA. There, she served as a senior advisor to the administrator from 2009 to 2017. She also established and directed the Office of Disability Integration and Coordination. Both at FEMA and after launching the Partnership for Inclusive Disaster Strategies, she led national and global transformation towards disability-inclusive emergency management, disaster risk reduction, and community resilience. She became WID CEO and executive director in 2019 where we are very blessed to have her, where she is bringing her lifelong commitment to advancing the rights of people with disabilities and expanding disability leadership locally, nationally, and globally.

>> Nicholas Love (Host):
Today’s topic with Marcie will be institutionalization. We’ll be talking about nursing homes and congregated settings for people with disabilities. Welcome, Marcie, and how are you doing today?

>> Marcie Roth (Guest):
Well, thank you very much, Nicholas. I’m doing just fine. Thank you very much. As we continue to address this very challenging failure of systems to do what is necessary for everyone to have an opportunity to live in our community, this is a really important topic to me. I’m glad to be here and glad to be talking about this with you.

>> Nicholas Love (Host):
Wonderful. We’re so glad to have you as well. Marcie, tell us about congregated facilities and the institutionalization of people with disabilities in the US and globally.

>> Marcie Roth (Guest):
So, many people think that this is a small and insignificant matter. The use of congregate facilities to house people with disabilities is something that has gone on unfortunately for centuries. It has never been a good place for people with disabilities to be, and for many, many years, decades, there have been efforts to replace the institutionalization of people with disabilities with community services, the kinds of supports and services that enable people with disabilities to live independently, to make choices. And yet despite all these best efforts, in the US, there are about two million people with disabilities living in long-term facilities also known as institutions.

>> Marcie Roth (Guest):
And many of these, but not all of them, are nursing homes or what are known as skilled nursing facilities. Among those two million, we’re also talking about group homes and places where people who require mental health supports are held in facilities. Then there is an additional two million people, many of whom have disabilities, who live in carceral facilities; jails, detention facilities, and other places where people are incarcerated. So, this is again not an insignificant number of people although the very humanity of these people is often treated as though it is insignificant.

>> Marcie Roth (Guest):
Globally, the institutionalization of people with disabilities is a huge number. And this includes children, babies, children, as well as older people. And just as it is in new US, in some cultures, it is far less common that people are served outside of their family home. But even in places where it’s assumed that people are not living in congregate facilities, in fact, if you really drill down, even in those places, many people with disabilities are in fact in these facilities. And the conditions, whether it’s in a developed country or a less developed country, the conditions are awful.

>> Marcie Roth (Guest):
If we weren’t already quite clear just how bad congregate living is for disabled people and for disabled people in emergencies and disasters, the last period in which COVID has taken its toll, it is more clear than ever just how bad these facilities, these institutions are for disabled people and particularly disabled people of color and other multiply marginalized people, people who are black, brown, people who are indigenous, as well as people who are LGBTQ, as well as people who have experienced extreme poverty, women much more so than men. And the facts in all of this together paint a picture of a kind of discrimination and segregation and devaluing of humanity that has been ignored for far too long.

>> Nicholas Love (Host):
Sobering, very sobering that so many people do not understand how big of an impact this has. So, during a disaster, after disaster, what’s happening in these institutionalizations and this congregate settings? Talk to me about what happens during those time periods.

>> Marcie Roth (Guest):
Well, so there are a number of really troubling issues. I’ll talk about a couple of them. One in particular is that although here in the US we have a number of laws… I think we’ll talk more about those later. But we have a number of laws that should be protecting people in disasters from institutionalization, and yet the numbers of people who are moved into nursing facilities and other long-term care facilities during disasters is actually especially disturbing. It is not uncommon that someone could be taken from their home and bypassing an acute care facility, not being provided with support in an emergency shelter setting where other members of the community might be, but may be taken directly from their home and admitted to a nursing home, for example.

>> Marcie Roth (Guest):
And this is often because there is this perception that people cannot get their needs met in a disaster in any environment other than a medical environment. This is a medical model way of thinking about disability. So if someone needs personal assistance services, if they need an accessible bathroom, if they need a place to plug in their disability-related equipment or medical devices, if their medications or disability supplies are damaged or destroyed in the disaster, all of these, rather than the planning that it takes for the community to prepare for the whole community in a disaster, it is assumed in many places that there is no other place that can meet people’s needs and so they are directed straight from home or from an emergency room or from a hospital bed into a long-term care facility.

>> Marcie Roth (Guest):
When you couple this with a number of things that happen in disasters that provide flexibilities, that are… There are flexibilities in disasters that the federal government confers to the states that very significantly cross the line when it comes to the rights, the civil rights of people with disabilities, and yet this happens again and again and again. There are unfortunately far too many examples over the period of the pandemic in which this sort of use of the federal government’s waiving certain obligations, despite the fact that there should be no waivers in disasters, there are no waivers in disasters, huge numbers of people have been institutionalized, whether it’s directly because of COVID or whether it’s been because of a co-occurring disaster, a hurricane, a flood, a tornado, a wildfire.

>> Marcie Roth (Guest):
There’ve been a number of concurrent disasters over the past year and the institutionalization of disaster-impacted people with disabilities has been higher. And after the disaster, once people have been admitted to these long-term facilities, oftentimes, whether they get lost in the system as a primary problem or whether what happens is that person’s home and community-based services are disrupted, the supports that they need have been damaged, the people who might provide those supports are no longer available, their home may have been damaged and accessible housing is particularly difficult at all times, even more so in a disaster, their employment and their ability to maintain their livelihood, all of these are disrupted, the person is in a facility and they are never again moved back into the community that they were pulled out of in the middle of the disaster.

>> Nicholas Love (Host):
So it’s like an individual is pulled into these institutions and is kind of trapped. You mentioned a whole community approach to preparation, so what should be happening during disaster to make sure that we don’t lose these people into an institutional setting.

>> Marcie Roth (Guest):
So, the process of whole community planning is one that is far less complicated than many people think it to be. One of the most key pivotal elements of it is Nothing About Us Without US, including people with disabilities at every step of the way in planning for, throughout responding, in recovery, and in mitigating what might happen so that the whole community builds a kind of resilience that benefits not just some members of the community, but in fact the whole community. So whether it’s in that community planning and the exercises that communities hold in the US and in many places around the world, there are emergency exercises that are conducted on a regular basis.

>> Marcie Roth (Guest):
And these are great opportunities for disabled people to participate and for us to be able to pose real world challenges in a sort of no-fault environment. And yet, unfortunately, in that planning, so often, rather than including people with disabilities, they use stuffed animals or they have people, actors, pretend that they’re people with disabilities. They’ll hang a tag around people’s necks that says, “I am deaf.” But these are not adequate solutions to the planning and exercising process because you need real people with lived experience posing those challenges.

>> Marcie Roth (Guest):
Exercises are an ideal opportunity to break things. Exercises are not intended for us to prove just how great everything is. When we were kids and we were participating in fire drills in school and they timed everybody and how fast can we get everybody out of the building, we didn’t inject the real world challenges that might actually teach us in a no-fault environment how to protect the whole community in that setting. So in the planning, we need to be looking at the entire process, the alerts and warnings, building evacuation, multi-story buildings, how people get from one place to another, from a building to a place of safety. What happens when people with disabilities have acute medical needs?

>> Marcie Roth (Guest):
Most of us most of the time don’t have cute medical needs, but when we do, we still need accommodations just the same as when we’re not in the middle of a disaster. So planning for meeting those accommodations as well, and then throughout the entire disaster cycle, to make sure that in that planning that we’re thinking through all aspects of the built environment, all aspects of emergency and disaster programs and services, and the imperative for equally effective communication access. Information has to be accessible, to be actionable.

>> Marcie Roth (Guest):
In a disaster, we want to be sure that everybody has the information that they need in a way that they most need to receive it so that they can take personal protective measures, so that they can help their family, their neighborhood, their community. When everybody has the information that they need, the whole community benefits from that. So, those are some of the things that should be happening. In some places they are happening, or at least they’re starting to happen, but in far too many places, they’re not happening at all.

>> Nicholas Love (Host):
I mean, it sounds so simple; inclusion, communication, preparation. It seems like a simple process. You talked a lot about it, so how has the COVID pandemic exasperated the situation in the form of people with disabilities in congregate facilities, in the non-stop admission to these facilities, and the denial of the relocation when people request it?

>> Marcie Roth (Guest):
Let me begin by saying that when we’re talking about most facilities, over the period of the pandemic, there has been so much focus on what is reported as the disproportionate death of older people, the disproportionate death of “the vulnerable, the fragile, the frail, the elderly”, which are all just offensive descriptors to begin with. But these are virtually all people with disabilities. You don’t go to a nursing home because you’re old, you go to a nursing home because you have a disability and your community has failed to plan to accommodate you and your disability.

>> Marcie Roth (Guest):
Many, many older people live at home and in their community for their entire lives, so institutions are not an inevitable part of the aging process. Institutions are what happens when the community fails to adequately meet everybody’s physical, communication, and program accessibility needs. So, since the beginning of the pandemic, a longstanding problem of infection control in congregate settings became even more deadly. So we’ve had now close to 200,000 people who’ve died in nursing homes and other long-term care facilities. Virtually all of them are people with disabilities.

>> Marcie Roth (Guest):
And the failure to provide the supports and services that these individuals should have been entitled to in the most integrated setting appropriate to their needs, which should have been a non-congregate setting, instead, most people were denied the opportunity to be in a safer environment. We all know that COVID-19 has been an absolutely horrific pandemic. It’s been absolutely horrible. But the number of black and brown and indigenous people with disabilities who have died and even more so the numbers of people of color who have died in nursing homes has been… I have to use the term genocide.

>> Marcie Roth (Guest):
People with disabilities, especially multiply marginalized people with disabilities have died in such shockingly high numbers that I don’t think there is another term that could more appropriately be used to describe the genocide of hundreds of thousands of people, hundreds of thousands of our siblings in the US. This is true globally. And based on the Centers for Disease Control and Prevention and their numbers, they have talked about 94% of the population who’ve died from COVID, not just people in congregate facilities, but 94% of the people who’ve died from COVID had pre-existing conditions, and I’m making air quotes as I say this, have had comorbidities, and more air quotes.

>> Marcie Roth (Guest):
These are words, these are euphemisms that are used instead of disability. But if 94% of the deaths from COVID here in the US, going on 600,000 people, 200,000 of them in institutions, 600,000 of them altogether, we’re talking about 94% of these people had underlying conditions. These were people thus with disabilities and these were people who had rights, and in at least far too many cases were denied their basic human rights, civil rights, to receive the services and supports that they needed to keep them safe and to protect them from COVID-19. To take that one step farther then, that unbelievable loss of life in these facilities… Well, let me back up for a minute.

>> Marcie Roth (Guest):
I talked earlier about how there are not supposed to be waivers of federal civil rights protections in disasters, in public health emergencies, and declared disasters. Despite the fact that there are not any waivers to those protections and despite the fact that the Americans with disabilities Act and the Olmstead decision that came from the Supreme Court as a result of the challenge to the Americans with Disabilities Act, there have been waivers that have allowed people to be moved from hospital beds into long-term care beds, not because there was a need for that individual to receive services in that long-term care bed, but because the hospitals needed the acute care beds.

>> Marcie Roth (Guest)
So while we’ve heard a lot of talk about alternate care settings, most of these alternate care settings were wings of nursing homes or congregate care facilities, long-term care facilities that were repurposed to move people out of acute care beds to make room for people who needed those acute care beds. As a result of the fact that people are allowed by the federal government despite those protections to be moved into these facilities, and added to that the extreme loss of life in those facilities made for a really lethal combination because those nursing home beds when left empty are financially a problem for the owners of those facilities.

>> Marcie Roth (Guest):
And many of those facilities are for-profit companies and leaving those beds empty is perceived by them to be an unacceptable status. So rather than focusing on safety as the absolute, hard stop, number one priority, there are many examples of where the priority was in filling those beds. During the pandemic, people with COVID and people who need a rehabilitation bed, not even because of COVID, those are very lucrative. Medicare and Medicaid pays way better for those folks than they do for long-term poverty rates for people with disabilities. So what then came as a result of this is that you had many, many people, either those who had COVID and were moved out of the acute care beds and into these long-term facility beds bringing COVID into the facility despite all the assurances that, no, they were being kept separate.


>> Marcie Roth (Guest):
That has not been the case. Or people who were being admitted to the long-term care facility who didn’t have COVID, who came from home, went to the hospital for some other reason, and were then transferred for post-hip replacement to these facilities and they were then admitted to a facility where COVID was rampant. As a result, even now with the successful vaccination of so many people in long-term care facilities, despite all of that, less than 50% of staff in those facilities have opted to be vaccinated, which means that those folks who were fortunate enough not to get sick before are now still at risk of getting COVID.

>> Marcie Roth (Guest):
The vaccine does not prevent COVID, it simply prevents the disproportionate impact of COVID, which is still not going to be… We all have high hopes that the impact of COVID for people who’ve been vaccinated will be less, there’ll be less hospitalization, less death. I have yet to hear anyone say that there won’t be any impact from COVID. And so again, people with disabilities are being discarded, erased, our lives are being so devalued by this constant churn. I’ve heard that over 100,000 people have been admitted to these facilities since the 1st of January. 100,000 people. It is extremely troubling.

>> Marcie Roth (Guest):
Combined with that is the very unfortunate circumstances that efforts have been made across the country, WID has been very involved in attempting to use the federal funding that is available through the Federal Emergency Management Agency, their public assistance category B, Emergency Protective Measures funding, to enable independent living centers and other disability-led organizations to assist people with disabilities who want to leave those congregate facilities. Those FEMA and the states have not allowed the use of those funds for this purpose. In Philadelphia, there were 20 people who had wanted to be a part of the transition out of those facilities and into a non-congregate setting earlier this year.

>> Marcie Roth (Guest):
While folks were arguing over whether or not those federal funds could be used for this purpose, all 20 of those people died from COVID. It is again a genocide of people with disabilities. And to this day, as we meet for this podcast, there is still no resolution in the use of those federal funds, which are being used for non-congregate housing for other people. They are not allowing for the use of these funds for people in congregate facilities because people are not considered to be “experiencing homelessness” if they’re in a facility, even this sort of facility. So, sure you have more questions.

>> Nicholas Love (Host):
You talked about the ADA and Olmstead. Can you share a little bit about how are these laws there to protect people with disabilities?

>> Marcie Roth (Guest):
The Americans with Disabilities Act and the challenge to the Americans with Disabilities Act that resulted in the Olmstead decision very clearly say that people with disabilities have a right to be served in the most integrated setting appropriate to their needs. The Department of Justice has gone on and very clearly stated that in almost every situation in a disaster, as well as not in a disaster, but in a disaster, a nursing home should never be the assumed solution. In fact, the Department of Justice back in 2007 in their ADA toolkit talked about the fact that it almost never should someone be sent to a nursing home rather than serving them in the community in utilizing the same disaster services that everybody else should be able to benefit from.

>> Marcie Roth (Guest):
The Rehab Act is now almost 50 years old and that law which… The Americans with Disabilities Act is 30 years old, the Rehabilitation Act is almost 50 years old, and that law speaks very specifically to the obligation that the federal government has whether they are conducting activities, meaning that the federal government is directly providing disaster services or whether they are funding the services of another entity, and so whether it is the federal government utilizing federal funds or whether it is the use of federal funds by those who are receiving federal financial assistance.

>> Marcie Roth (Guest):
So that could be a state government, that could be a local government, that could be a private entity, any use of federal funds requires non-discrimination, equal access, physical program, equally effective communication access, without exception. There are no waivers to that. So when we find ourselves in a situation where none of these protections are being monitored and enforced, and very clearly the numbers of people who should have had those protections based on their disability, given the fact that there are no waivers to those protections in a disaster as very clearly stated by the Department of Justice, Department of Health and Human Services, Department of Homeland Security, and in a disaster, in a… Yet again, this is in the US.

>> Marcie Roth (Guest):
In a federally declared disaster and in a public health emergency, both, there are obligations that the federal government cannot give away just because they’ve given money to someone else. So once there’s been a federal disaster declared in addition those disability civil rights laws and in addition to the overarching civil rights laws, the Stafford Act, which is the law that directs all emergency and disaster-related federal actions, calls for non-discrimination. So we very clearly are seeing a significant failure in the monitoring and enforcement of these laws. Globally, many countries have their own disability rights, laws.
Marcie Roth (Guest):

And in almost every member state of the United Nations, there has been ratification of the Convention on the Rights of Persons with Disabilities, the CRPF. And those human rights of people with disabilities include in many of the articles that people with disabilities have the human right to be free from institutionalization, to be free from being the very circumstances under which we are seeing people being held in congregate, dangerous settings. Finally, it is of the utmost importance that we move beyond these as disability rights issues, these are disability justice issues.

>> Marcie Roth (Guest):
We need to move beyond the trying to make laws work when it comes to people with disabilities, we need to instead be working for a just world in which people with disabilities don’t have to fight for rights or look to the monitoring and enforcement of laws, but rather that we as disabled people are as worthy of every opportunity as any other human being and that the environment, the world that we live in is no longer one in which we have to try and force our way into systems and laws and programs that were not designed to work for us.

>> Nicholas Love (Host):
Thank you, Marcie. I couldn’t agree more with that statement. We shouldn’t have to fight just to be part of our world and we shouldn’t be ignored simply because there’s a disaster. You’ve talked about what’s happening in other countries, share a little bit more about that. What’s happening in other countries?

>> Marcie Roth (Guest):
Yeah. WID has had the opportunity over the past couple of years to be at more and more tables where Nothing About Us Without Us has actually included WID and our voices as a disability-led global rights organization, an organization that is committed to justice for 1.3 billion people with disabilities. We have been very active in both United Nations initiatives around humanitarian action and persons with disabilities. We are excited to be leading efforts to bring Disabled Persons Organizations, DPOs, Organizations of Persons with Disabilities, they’re sometimes called OPDs, and human rights community together.

>> Marcie Roth (Guest):
One of the things that WID has been very active in the past, not quite a year, in July of 2020, after recognizing there was a very significant gap in the resources made available to disability-led organizations in disasters by humanitarian funders, corporations, foundations, and others, we launched the Global Alliance for Disaster Resource Acceleration and have been working with our corporate and foundation partners and allies to develop systems and processes that match those humanitarian funders directly with disabled persons organizations that have been impacted by disasters to support those organizations to serve the people in their community.

>> Marcie Roth (Guest):
Not from a charity perspective, not from an approach that directs those resources in a way that doesn’t support community leadership or steps in front of community leaders, the Global Alliance for Disaster Resource Acceleration intends to support the leadership of the most impacted people with disability lived experience and the lived experience of that community and giving them the resources that they identify that they need in order for them to serve their community, both disabled people and others who are impacted by disasters. As of this point in the journey, the Global Alliance for Disaster Resource Acceleration, also known as GADRA, has reached folks who are wanting to hear more about what these issues are and how they may get involved.

>> Marcie Roth (Guest):
We’ve reached people in 69 countries, six continents. And as we get closer to the end of our first year, we are very excited about our ability to make those matches and to bring together those humanitarian actors with those local disability-led organizations to make the kind of improvements and to provide a kind of resources and support that do improve outcomes.

>> Nicholas Love (Host):
That’s absolutely wonderful. It’s great what WID is doing to be part of that solution. As we’re closing this down, is there anything specifically, Marcie, that you want to talk about, share that you haven’t shared yet about this topic?

>> Marcie Roth (Guest):
I think the one thing I want to say is there is lots of discussion underway about building back better after COVID. I would like to suggest that rather than building back better, we need to be building forward better. What we were doing didn’t work. Anybody who’s not sure about that probably hasn’t been paying very close attention. If we really want to be better, we need to be building forward, we need to be building in ways in which disabled people are… Our knowledge, our lived experience, and particularly the lived experience of those of us who have been most significantly impacted needs to be what guides us to build forward better. And we at WID are learning and growing in our ability to center our work in ways that really do yield that kind of building for the future.


>> Nicholas Love (Host):
Thank you, Marcie. This has been a very interesting and sobering discussion. I really appreciate it. Thank you for your time, your leadership, your commitment to the 1.3 billion people globally with disabilities. Thank you for everybody who’s tuned in for the debut episode of What’s Up WID. We’re excited to have you join us for our next episode in two weeks. In the words of one of our founders, Ed Roberts, “We need to get out there and change the old attitudes,” so, as Marcie said, we can build forward better. Thank you.

>> Marcie Roth (Guest):
Thank you very much, Nicholas. Really appreciative of your partnership. Let’s lead on together, make some good trouble.

>> Nicholas Love (Host):
Yes, yes.


Banner with text: COVID Blog: Intensifying medical hazards for people with disabilities. Icon of speech bubble with WID globe. Background photo of a hand typing on a laptop computer and author photo with a magenta tint.

COVID Blogs: Intensifying Medical Hazards for Persons with Disabilities

by Abha Khetarpal

The COVID-19 pandemic has disconcerted everyone on this planet. Varied scales of interventions, strategies and manoeuvres are being initiated and tried in alignment with the evolving situation. But worldwide, a community that is facing the brunt of this public health crisis is the disability community. People with disabilities, more than one billion people all over the world, are feeling all the more marginalized and isolated. Their plight is even worse in low income and underdeveloped countries where healthcare access is a real challenge for them.

Persons with disabilities are in many cases more susceptible to coronavirus infection, but systemic discrimination against people with disabilities remains interspersed, from testing to treatment.

Having a disability doesn’t necessarily put someone at a greater risk of getting the infection, but in certain disabilities or chronic conditions, the contagion may prove perilous. Those who are undergoing post-polio syndrome may show drastic changes in lung function and are more prone to pneumonia. In musculardystrophy, progressive weakness of respiratory muscles can result in varying degrees of breathing difficulty. Respiratory issues after spinal cord injury (SCI) is more severe in high cervical injuries, with low lung volumes and respiratory muscle weakness. People with psychosis are linked with cardiovascular and respiratory diseases. Those who have immune system disorders like Multiple Sclerosis, Ankylosing Spondylitis, HIV/AIDS, Lupus, and Sickle Cell Anaemia are at a greater risk of critical illness if they get infected with COVID-19, because the virus attacks the immune system. Epilepsy, being a neurological condition, is also included in a list of conditions that may increase the risk of serious COVID-19 infection. Health alerts, advisories, and hygiene measures are not accessible to all.

As a person with disability with weak lungs due to post polio syndrome, I have my own fears. With increase in number of cases and threat of community spread, demand for medical supplies and ventilators is increasing, and in case of rationing of supplies or treatment, I could be on the losing side of a doctor’s life-or-death decision.

In countries like India, lack of testing, inaccessible testing centres, inaccessible pharmacies, and exorbitant cost of treatment pose a greater threat for people with disabilities. Quarantine facilities present many of the same concerns, in addition to high exposure to other people, presenting reinfection risks. Moreover, persons with disabilities in India are not covered by healthcare insurance, leaving them with no option but reduced or limited access to healthcare services.

Exposure to healthcare barriers has accentuated their vulnerability to infection and complications, putting people with disabilities in a catch-22 situation. Apart from the distress caused by the contagion, secondary health conditions of disabled people are being totally neglected. The greater the degree of inaccessibility, the more that additional health conditions are exacerbated.

“I am more prone to produce ear wax and normally have to visit a healthcare facility to get it removed. This time I could not visit my hospital due to the lockdown. My personal attendant tried to remove it at home with cotton buds but because of spasticity of my muscles, the wax was pushed deeper inside and created a blockage. Now I have developed hearing loss and the pain is increasing every day. At present, the hospitals are restricting visitors amid the pandemic. She is neither able to visit the hospital nor do I have any access to doorstep medical services”, says Meenu Mani Arora. She is a resident of National Capital Territory of India, and is a woman with cerebral palsy. She uses a power wheelchair and needs assistance in everyday tasks. Inability to get medical help even for a minor procedure has lead to her hearing loss and severe ear infection.

Necessary physical therapies and occupational therapies are not available during lockdowns, as these are not included in essential services. As for my personal experience, in the absence of physical therapy I feel greater muscle stiffness and lack of blood circulation in my limbs.

Persons with blood disorders and Thalassemia patients have faced an acute shortage of blood in the blood banks across the country as blood donation drives have been called off due to lockdowns and red zone areas.

From these examples, we can imagine the level of suffering and challenges faced by hundreds of thousands of persons with disabilities due to non-availability of adequate medical facilities.

Controlling contagious disease requires immediate access to care, and a minimum of red tape and affordability barriers. Article 25 of United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) clearly mandates the State parties to recognize that persons with disabilities have the right to the enjoyment of the highest attainable standard of health without any discrimination.

The key learning from COVID-19 is the significance of a strong public health service. We need a more sustainable and accountable health system that serves us all.

Links to documents referenced:

Report: 1 billion people with disabilities globally

Human rights expert, Catalina Devandas

ILAE: Epilepsy & COVID-19


Abha Khetarpal, an Indian woman, sitting in her power chair and smiling. She is wearing a beautiful orange tunic and deep red pants.About the author

Abha Khetarpal is a Counselor, writer, motivational speaker, teacher, and activist with polio from New Delhi, India. You can find more of her writing at Point of View, Sexuality and Disability , Feminism India, Medium, and Youth Ki Awaaz.

Social Media profiles:

Abha Khetarpal’s Facebook

Abha Khetarpal’s Twitter: @Khetarpalabha

Abha Khetarpal’s LinkedIn 


Would you like to write a blog post about your COVID-19 experiences as a person with a disability or a disability-led organization? Submit a blog pitch via this form.

If you are having technical issues or accessibility issues on this site, email wid@wid.org.

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Mint green text on deep blue background, reads: National Council on Disability COVID-19 letter to HHS Office for Civil Rights

National Council on Disability COVID-19 letter to HHS Office for Civil Rights

March 18, 2020

Roger Severino
Director, Office for Civil Rights
U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington DC 20201

Dear Mr. Severino:

On behalf of the National Council on Disability (NCD), I write on a matter of urgency regarding non-discriminatory access to life-saving medical care for people with disabilities who contract COVID-19. Due to the concerns detailed in this letter regarding the predicted impact of COVID-19 on people with existing medical conditions coupled with predicted rationing of life-saving care, NCD requests that the Office for Civil Rights (OCR) quickly issue a notice to physicians and hospitals specifying the applicability of non-discrimination requirements of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act in making treatment decisions. When OCR talks, the medical community listens, and OCR has a window of opportunity now, before physicians become overwhelmed with COVID-19 patients, to provide necessary information to the medical community about the provision of non-discriminatory care.

Current projections show that the need for intensive medical care for victims of COVID-19 will far exceed the resources of the US healthcare system, and medical professionals are already predicting the certainty that emergency and intensive care will have to be rationed. The lack of resources to treat the population who will contract COVID-19 creates a deadly outlook for people with disabilities.  This is not hyperbole – the people most susceptible to COVID-19 have medical conditions, e.g., weakened immune systems, heart disease, diabetes – exactly the people who will be most impacted by emergency or intensive care rationing. Physicians will have to make decisions on who will get life-saving care, and who will not.

Unfortunately, as OCR knows, people with chronic illnesses and other disabilities have been  left behind, denied resources to survive, and as a result, have suffered great losses of life because of lack of emergency preparation that respects every life, and by outright discrimination by medical practitioners who, through ignorance of the law or due to the belief that people with disabilities are less valuable, and therefore less deserving of medical care, than those who are not. Such prejudice has fed into the belief that people with disabilities, especially the most weak and vulnerable, should be put out of their misery. NCD opposes these views and any medical actions that implicitly and explicitly disregard the dignity of the lives of people with disabilities. These beliefs have always been dangerous – but COVID-19 raises NCD’s concerns to an unprecedented level.

OCR is aware of the historic and persistent discrimination against people with disabilities in healthcare. We documented this issue in our recent reports on bioethics and disability, explaining that the lives of persons with disabilities continue to be devalued in the medical profession due to pervasive negative biases and inaccurate assumptions. The belief that people with disabilities have a lesser quality of life and are less valuable to society, has led to deadly consequences – physicians choosing to provide medically scarce resources to non-disabled or healthier people – a violation of human rights, civil rights and a reinforcement of the belief that people with disabilities are lesser-than and less deserving of life itself.[1] Indeed, recent articles regarding the likely response to COVID-19 published by major media outlets are already predicting – unapologetically – that the lack of capacity of the US healthcare system is going to result in rationing of life-saving care for people with chronic illnesses and pre-existing disabilities.[2] Such discourse  has deep historical foundations that has led to discrimination and access to healthcare, including life-saving care, for people disabilities throughout the nation’s history. Once again, society, including physicians, is already accepting the conclusion that this group will be denied the right to life due to a lack of resources. Once again, it is a forgone conclusion that people with disabilities are the most expendable group. Once again, as in previous natural disasters and medical crises, people with disabilities are being told to prepare to die.

OCR has recognized the long-standing discrimination against people with disabilities, taking action to address discrimination on a case by case basis, but the world has changed – we are experiencing a quickly progressing medical crisis which will disproportionately impact people with disabilities on a broad scale. OCR should rapidly head off what could be yet another time in US history when people with disabilities are left to die because medical decisions remain infused with disability bias or because physicians are not aware of their responsibilities under the Americans with Disabilities Act, the Rehabilitation Act, and the Affordable Care Act. More evidence of the need for immediate OCR action is found in a cursory review of State protocols for standards of medical care for times of crisis – like a pandemic – that show that people with existing disabilities will be, if the plans remain the same, discriminated against in the provision of COVID-19 care.[3]

Because this historic pandemic disproportionately threatens the lives of people with disabilities, NCD strongly urges OCR to immediately issue a notice to the nation’s medical providers of their obligations for non-discriminatory medical care under the ADA, the Rehabilitation Act, and the Affordable Care Act. The notice should include a statement on the historic and deep-seated biases and stereotypes about people with disabilities that have resulted in eugenics and lack of life-saving care, ask physicians to be mindful of this when making medical treatment decisions, and make clear that, even in an environment where health care resources are limited, the civil rights of people with disabilities cannot be suspended or limited.

Thank you for your work to ensure access to medical care for all people and your efforts to address disability discrimination in health care. OCR’s efforts have improved the lives of people with disabilities and your leadership is valued and appreciated.

If you wish to discuss this with me directly I would be delighted to do that at your convenience. However, if a member of your team would like to discuss this with a member of my team please have them contact Lisa Grubb, Executive Director and CEO at lgrubb@ncd.gov, Joan Durocher, General Counsel and Director of Policy at jdurocher@ncd.gov, and  Ana Torres-Davis, Senior Attorney-Advisor at  attoresdavis@ncd.gov.

Respectfully,

Neil Romano
Chairman

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End the Atrocities at Border Detention Facilities

The World Institute on Disability (WID) joins with organizations and individuals from across the country calling for an end to the atrocities being committed at south Texas detention facilities, more accurately called concentration camps or, at minimum, internment camps as addressed in the July report of the Office of the Inspector General from the US Department of Homeland Security. The degree of inhumanity on display is frightening and devastating.

We respectfully request that the Commission immediately conduct a comprehensive in loco visit to the United States and Mexico to consider actions and policies by both States that are having dramatic negative impacts on the human rights of migrants, particularly asylum-seeking Central Americans who transit through Mexico to reach the United States. We ask that the visit be followed by a report that considers the full extent of human rights violations experienced by migrants in Mexico and the United States. We further request that, after this visit, the Commission engage in ongoing, robust monitoring of the treatment of migrants in the region. This monitoring should include hearings before the Commission during its sessions, additional visits to the region—including the southern border of Mexico and Central America—, development of standards relating to the treatment of migrants “safe third country” and prompt consideration of precautionary measures requests and individual complaints.

WID believes that the mistreatment of asylum-seekers at the border is related to a broader cultural decay that has taken root in US society.

The Nonprofit Quarterly states, “We could cite many examples. The revealing of sexist and racist posts by customs officials on Facebook is one obvious example. We also recall that it was less than two years ago when Nazis openly marched in the streets in Charlottesville.”

And, where in all this inhumane process is the inclusion of people with disabilities in receiving much-needed services and/or medical care? When over 20% of the world’s population has a disability, people being held forcibly at our southern border are disproportionally more likely to have a disability or to acquire a disabling condition as a result of their treatment placing them in much need of disability-related services and justice.

WID joins our “civil society partners in knowing we must declare racial superiority as antithetical” to our common humanity and that our leadership supports racial, disability and economic justice in our organizations, our communities and in society as a whole.

WID demands that immigrants with disabilities be given rights granted under the Americans with Disabilities Act (ADA), be evaluated for their access needs and receive effective and timely service.

Comments on this statement may be directed to Anita S. Aaron, Executive Director/CEO, World Institute on Disability, anita@wid.org.

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A futuristic robot thinking, surrounded by math equations

AI AND ACCESSIBILITY

Artificial Intelligence (AI) or artificial narrow intelligence (ANI), artificial general intelligence (AGI), artificial super intelligence (ASI) is a critical issue for people with disabilities and it will only grow in its impact. The World Institute on Disability (WID) is aware that AI has already brought many remarkable tools to disability access and inclusion; what has already been achieved illuminates the promise that AI can facilitate more accessible content for people with disabilities.

For example, software is now learning how to recognize and respond to images, sounds, and linguistic expressions, which have opened up new opportunities for people with many disabilities. When the data sets used are designed for full inclusion, tools like those outlined below will positively change the landscape for people with disabilities:

  • For individuals who are deaf or have hearing loss, auto-captioning with AI.
  • For people who are unable to drive, autonomous cars built with Universal Design principles.
  • For people who are blind or have low vision, facial recognition and image recognition to support interaction with the environment.
  • For people with cognitive disabilities, language use to facilitate comprehension.
  • For job seekers with disabilities, with an unemployment rate of more than twice their non-disabled peers, outcomes can change with the development of accessible and intelligent AI solutions which will support job seekers and employees in developing their professional skills, improve workplace culture and expand inclusive hiring.

The concerns of WID, many corporations and public and private sector organizations focus on the critical need for AI standards for privacy, ethics and bias so that full inclusion of persons with disabilities in the evolution of AI occurs. Many of us foresee compounded risks of AI use unless there is commitment to and prioritization of privacy, ethics and bias.  For example:

  • Models learning from biased data may reproduce and continue historical biases;
  • Training data may under represent outlier populations, which often include people with disabilities, and therefore thwart or deny full inclusion;
  • Building inclusive data sets will prove essential for developing effective solutions, but also hold challenges such as requiring people to waive privacy rights;
  • Data collection, machine learning training protocols and programming may not include representation from individuals with disabilities or professionals in the field with the appropriate knowledge to plan for full inclusion; and,
  • Safety, security, bias and accessibility may be a lower priority than speed.

So, while AI is a great opportunity, it is also a great threat to full inclusion for people with disabilities.  Most researchers, accessibility experts, and disability rights organizations agree that building inclusive data sets is one of the greatest challenges for researchers and that AI accessibility should be a base level requirement for AI standards.

WID also recommends that persons with expertise in disability culture and accessibility be engaged early in the AI standards development, as well as those with expertise in recognizing and addressing implicit bias and those who can set guidance for developing inclusive data sets.  Inclusion of those with appropriate expertise will go far to achieve full inclusion of persons with disabilities in future data sets.

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